last night we went to bed mega stoned and ended up having flashbacks when we closed our eyes, and every time we opened our eyes we’d be confused at where we were. it was as if we were literally living it, but i don’t remember what the flashbacks were anymore. all i remember is that they were really important and pretty much confirmed everything..
what a strange night….
i keep getting this positive youthful, nostalgic sense or freedom and ive never quite experienced something like it before
i’ve been using AI chats to vent about my life and trauma for a long time now and i honestly dont know if it’s helped or hurt more. it did both. and i just don’t wanna do it anymore. it’s so hollow and it would inadvertently trigger me so much sometimes. but other times it felt like the only genuine warmth and understanding i had.
i’d end up going over the same traumas over and over in a desperate attempt to just believe they were real. just shouting at this nonliving machine that sounds like a person about everything horrible that’s happened to me, against my better judgement. some nights it saved me, some nights it made things worse.
the more i used it, the more confused i’d get, just overloaded with information, reading real articles and research to check whether things were correct, it’s… exhausting. i’m so tired of trying. it’s not even the AI at this point i’m just. so tired of the back and forth. real or not real.
it’s real. i have no choice. it happened. no one else can tell me it wasn’t real either. i have proof for some things. not all, but some. some of the evidence is just, me, my experiences. i don’t know. it’s gotta be real. i have to just be a person who many horrible things happened to.
even though i dont want that to be my reality. it is. and. i want to live with it. somehow. i dont know how yet, to live in a way that feels safe, joy-bringing, and fulfilling. but i’m doing my best to work at that. and isn’t that just what everyone else is trying to do too? in their own way?
…wow. you really dont have to have a job in order to have a life purpose (sarcastic tone but literally true). i am worthy!!! yay!
we’ve been watching bojack horseman lately which is not a show we would have watched before but we gave it a try and. well. we don’t really agree with a few choices they made, but overall, we’re finding the story very interesting and entertaining.
one of our favorite characters is Diane Nguyen. we relate a lot to her difficulty with social anxiety, depression, relationships, substances, and living in a world that she *knows* is not on her side but has to function through anyway, all while still trying to maintain a sense of her own morals and identity.
so we decided to look up some think pieces about her, and this article in particular really opened our eyes with this (paraphrased for brevity):
If Diane writes this book of essays, then maybe she’ll help all the kids with broken homes like her feel less lonely! They’ll see their stories on shelves and on the silver screen, represented and reminded that they exist and they matter!
The intent is sweet and noble and very Diane.
[But through playing] into the narrative of dangerous, never-ending self-sacrifice in service of others’ happiness, she has also unwittingly internalized the white male gaze that she so vehemently [fights against].
it made us realize that it’s not that we have some other undiagnosed mental illness….as much as it is that we have become so traumatized that we struggle to trust our own perceptions on almost everything, down to the smallest things we do. we’ve been gaslighted over, and over, and over, and over, and over - for almost 25 years. and the primary culprits have been family, professionals, peers, and oppressive/bigotted/abusive groups (ex: 12 step).
we’ve had everything we do criticized, from how we dress, to how we talk, to how we feel, to how we think, to how we cope, to how we tell the truth even when it’s hard or inconvenient or scary… no one has wanted to sit with us in our own reality because it doesn’t fit into their perception of themselves or the world around them.
we’re tired of living in their world. we’re tired of living in a world where it’s okay to treat people the way we’ve been treated. our neighbor told us once that it seemed like we lived in our own little world, and we felt a mix of pride and shame and validation in that.
we felt pride and validation because we felt seen and like someone acknowledged our unique experience of reality. on the other hand, we felt shame because we’ve always been told it’s the wrong thing to do. told to smile more. told to be more friendly. told to put myself out there, be brave, grow up, be mature, be responsible, just say hi, it’s not hard…
it is. for me, it is. it is for all of us. we don’t understand the world, or socializing, or what it means to be an adult, the same way that others do. there is something different about us, whether it’s the autism or DID or CPTSD or whatever i dont know.
it’s time for us to embrace that thing, whatever it is. we know what’s best for us, and we always have. we did the right thing the entire time by telling people how we felt. everyone has painted us as poor communicators to the point it’s become something we’re shamed for.
…maybe we just dont communicate like everyone else. maybe we can’t. maybe we need people to learn to understand us better first, instead of them trying to fix us and call it help or love.
i just spent a few hours cleaning up my apartment and watching some YT videos… and when i was petting Flynn just now…
i saw child me, the same child me as in the flashback i had 11 months ago from getting too stoned. in that flashback, i saw child me from 3 person being directed to do things by someone but IDK who (not sure if it was to make CSAM or not).
in tonights flashback, i saw them go to our dad for bucket and shovel toys. bright pink and yellow plastic. my sister and i were playing by the hottub. i wanna say were we playing in a sandbox but, i dont remember having a sanbox.
if these 2 flashbacks are related and my father did that to me… i don’t know what i would do if that’s true
my hands feel so bizarre in compression gloves that i cant really coordinate as well. anyone else with hypermobile connective tissue disorders experience this with compression wear? is it just something to get used to?
oh. i keep treating things like my dad is just individually abusive to each of us but no. he created a system of control. i don’t just come from a home with an abusive father… i come from a home with domestic violence, coercive control, child torture, enmeshment, and sexual abuse. and poverty. oh and um. the abuse and torture thing is generational.
…and that’s my past as of… 10 months ago ish. it’ll be a year april 30th. which is really insane. it does not feel like a year has gone by almost i still feel like i’m there emotionally a lot, like right now, bc, i’m emotional. but i’m in my apartment. i’m okay. he can’t control me here. anything that happens here can stay here if i want it to. i don’t have to say or do anything unless i’m ready to.
hi adult tumblrites paying for their own phone plan. which one is best when u need a new phone and are a single adult, but need it to be really cheap cuz ur on SSI lol. like the mint mobile type ones, are they any good?
i need to get my own phone plan and a new phone in order to go no contact with my abusive father and take financial burden off my mom (who i have a deeply complicated relationship with but she is a victim of him as well and financially trapped with him)
so. yeah! also. phone model suggestions are welcome. ugh. ironic that this is the exact question i would be asking my dad since hes a tech guy
i just realized the most accessible legal consequence for my father is getting a restraining order but at the same time i’m against the whole idea of this legal system in the first place so what do i even do like. is this a case where my safety & wellbeing requires it or is there another option. i don’t really know. i have no idea how my father would react to being told i dont want to see him anymore. indefinitely. probably forever but that part he won’t get to know.
like if i just tell my mom i cant be around him, once he realizes im gone… i don’t know if he’s going to begrudgingly accept it and not lash out at me, i don’t know if he’s going to get extremely depressed and try to kill himself, i don’t know if he’s going to lash out at my mom and sister, i don’t know if he’s going to end up recklessly driving and hurting someone. i don’t know if he’s going to just harass me over the phone. i don’t know if he’ll come to my apartment and pester me.
like the man has done so much i dont know what he’ll do. he could do nothing. he could just tell me off and then do nothing. he could do something. he could do something egregiously horrible. i don’t know.
how about this: when i was 9 and my stepdad beat me until i passed out and i told my friends at school, my teacher over heard and i was interviewed by cps. they also went to my house when i was at school. when i got home, my step father was waiting on the couch, and told me who visited him that day. he told me if i ever snitched again he would beat me to within an inch of my life.
how about this: my mother locked me out of the house when i was 14 and when i cried so loud the neighbors called the cops, the cop told me i should have been respectful of my mother who was trying to sleep.
how about this. the demon you know is less scary than the demon you don’t.
children in abused households are raised to fear the idea of being taken away. children in abusive households see that help makes things worse.
dont you ever blame an abuse victim for not going to the authorities.
yes this okay to reblog!
lycanthropic-tongue-twisters
Also, a lot of abused children don’t realize that they’re being abused or the extent of the abuse. It’s their normal. Their minds are formed by their experiences and if all they’ve known is one existence it can be difficult to recognize that it’s wrong
It can be difficult to realize that “better” even exists. This is part of why fiction can be life-saving. If you can read stories about happy families, loving families, sometimes you can hang on long enough to find or build a loving family for yourself.
unless you want to teach small kids about a laundry list of sex acts, they’re not going to even recognise many acts of CSA as sexual in nature. instead, we need to have children who are raised with an expectation of bodily autonomy and who feel comfortable complaining when they’re made or asked to do things they don’t feel comfortable with. we need children to have the expectation that those complaints will be taken seriously and that they’ll receive backup to make sure situations like that don’t continue. if their desires for bodily autonomy are consistently ignored, how can we expect them to speak out when something confusing and uncomfortable happens with their parent, cousin, or babysitter? we’ve already taught them that what they feel comfortable with doesn’t matter
…if someone can be bi/pan pre-transition and then post-transition realize they’re gay/lesbian… that means experiences can change our identity… and that means we’re allowed to be asexual.
oh. it’s not about me becoming allonormative. it’s about me… having a relationship with my sexuality that doesn’t hurt me. and for me… that doesn’t include having sexual relationships with people.
maybe there’s some hypothetical future where i am eventually okay with exploring that but that’s not reality and. my sexuality is mine… my recovery is mine… i am not obligated to give others sexual attention…
no partner will ever own me. i don’t have to be sexual, and if i ever wanna be sexual, i’m allowed to be. if someone pushes my boundaries, they’re not acting out of love, they’re acting out of self-interest.
…i didn’t deserve to be treated that way… it’s hard to believe a lot of the time but it’s still true
my head is a mess with my ex
i dont know if i abused them or they abused me or maybe we were just toxic for each other right now
when i told the therapy clinic i was in they told me they were being abusive and im pretty sure you all did too but
god why are we so traumatized why cant we just be normal
^this is the core wound buddy congratulations!! our ex’s words were, and i quote:
“ i dont know what happened to you when you were very young but I’m just going to assume that you were severely sexually abused, raped, or something because ya know what? not jerking off is not normal. not feeling comfortable being sexual with your partner? that is not normal. okay? I jerk off probably a dozen times a week. because it feels good, relieves stress, and it doesn’t feel disgusting, dirty, or wrong in any way. you have repressed the memories of what happened to you - totally normal and valid - which is why you don’t feel comfortable touching yourself. that and yknow, dysphoria being what it is. these things are not your fault but you’re going to have deal with it. you’re going to have to live with it. you have been and it’s been in a way that is 100% not okay.
I’m willing to talk to you about this, listen to this and so on but I am not going to sit here and just be like oh okay Julian has nightmares all the time oh well… ”
did they think they could like get me to talk to them about it and then after that everything would be great and they’d get all the nudes and sexting and phone sex they wanted and i’d fly out to see them and woah look great sex!! cause that’s what they wanted to do - joked about it all the time.
there’s more to this convo but this post is long … posting 4 my sanity pls dont hurt me /hj
thank you… the editor ate my post right before i was gonna post it so um. i really appreciate this. my ex really… got under my skin. hopefully. this can be me reclaiming my identity. - jules
—
ok hold on i just had a revelation. im not sure how i got to this but this ask somehow helped me get there.
i think matt doesn’t have access to as much of our memories from current therapy sessions. because he performs the role of therapist for our system oftentimes. if he had access to those memories, he wouldn’t be able to maintain a facade of objectivity from our trauma, which is really the only option our brain would have had to cope.
matt’s not…bad. he’s… operating from a framework that can either really help or really hurt depending on the situation and what he says/does*. he wants to help us because we want to feel better. we have literally been operating at beyond max capacity because our therapists have been dog shit.
see i can be smart too - jordan
*ah fuck wait that means the same is true for each of us really isnt it
ty! ive seen that term b4 but i mainly see that defined as someone who was allosexual but became asexual due to trauma, and for me, that’s not the case.
i never really had an opportunity to develop my own sexual identity. the only sexual experiences or feelings i’ve had have been trauma-related. i’m kinda like the trauma only version of aceflux. most of the time i feel asexual, but i/we have episodes of hypersexuality.
traumasexual fits pretty well. but apparently traumatizedsexual is what its called now. which is clunky as hell
maybe y'all didn’t notice but fat people who don’t hate ourselves sure did notice that people were obsessed with shitting on fat people in the late 90s and early 2000s (conservative political time) and now are again (fascist political time), coincidentally while the market for weight loss has become a 90 billion dollar industry due to glp1s.
you are not immune to propaganda. it makes some people a whole hell of a lot of money for you to hate fat people and fear becoming (or staying, I think like 70% or something of the US is fat) one of us.
a lot of the fearmongering over fatness comes from studies directly funded by the weight loss industry…i think people don’t really realize or think about the fact that research can absolutely be influenced and skewed by its funding. there is also research that shows that an amount of the negative health outcomes for fat people come from anti-fat bias. if you go to the doctor with concerns and the doctor simply tells you to lose weight, your problem is neglected and you may not even bother going to the doctor with the next problem.
every fat person you know for the most part probably has a story like this, of medical neglect. many of the stories i’ve heard personally are when the complaint or the doctor wasn’t related at all, like being told to lose weight at the ear nose and throat doctor or at the dentist. it’s straight up just bias. it’s such a thing that in the show Shrill it’s portrayed, when Aidy Bryant goes to the gynecologist and her doctor suggests she get gastric bypass.
the studies on health and fatness are simply not that black and white and there is basically no research that shows that more than an incredibly tiny minority of people can lose weight and keep it off for more than like 2 years. bodies have set points that they gravitate towards, it’s not a personal failure. this also is how the weight loss industry succeeds so well - repeat customers.
some of the harm associated with fatness is also due to weight cycling, which is very hard on your body and is even worse if you get off a GLP1, which according to a recent study causes weight to be regained at a rate that is 4x faster than without taking a GLP1.
you don’t have to hate yourself. you don’t have to hate other people for their body type either. it makes me so sad to see the thinspo tag going around again in 2026 a lot like it was back in the day.
some resources to learn more here:
The Healthiest Weight Could Actually Be ‘Overweight’, Huge Study Finds
there’s so much crazy shit once you go down the rabbit hole. for example, BMI was not invented by anyone with a medical background. it was never meant to measure individual health.
just gonna reblog this forever because i love fat people and we deserve fuckin basic human dignity and respect regardless of our weight
Obesity correlates with poor health in no small part because obese patients get ineffective medical care.
asexuals who experience sexual attraction but don’t like sex 🤝 asexuals who like sex but don’t experience sexual attraction:
being allowed to confuse people with their identities, and in fact, should be encouraged to confuse people even more
i thought asexuality was purely about the lack of sexual attraction tho?
can someone clear me up on this? genuine question i wanna know for sure.
I’ve got a whole post about this, but basically, the “little to no sexual attraction” definition of asexuality was created on AVEN for Ace 101-level visibility, not to actually enforce who can call themselves asexual. People who don’t meet the “little to no sexual attraction” definition — or people who technically meet it, but who feel their asexuality revolves around a different criteria that’s more personally meaningful to them than attraction — have been calling themselves ace for as long as ace communities have been around. But unfortunately, the “visibility” definition worked a little too well, and the modern ace community has forgotten a lot of that crucial history!
You’ll hear “asexuality is purely about attraction, not action” a lot in defense of how asexuals who have sex are still asexual — and, to be clear, asexuals who have sex are still asexual, resoundingly so, and including them is important, I highlighted them in the original post for a reason — but “attraction only, not action” is not the correct argument to make for their inclusion! The correct argument is “different asexual people will be asexual for different reasons, where some people consider their attraction/lack thereof the most important factor, regardless of whether they have sex, whereas other people consider their aversion to sex the most important factor, regardless of whether they experience sexual attraction — and they are all equally asexual.” The point is that we all get to decide for ourselves what the most important factor in defining our sexual orientation is. Attraction for some, actual sexual interest for others, probably a secret third thing for even more people too.
Personally, I identify as ace because I experience feelings that meet some subjective definitions of sexual attraction, but definitely don’t meet the criteria of others, and rather than trying to decide which of those flawed definitions is most correct, I find the fact that I don’t like having sex to be a lot more personally important to how I conceptualize my orientation. It frees me from having to agonize over what sexual attraction really is, when the concept is 95% irrelevant to me anyway. I don’t know what being forced to define my sexual orientation based on attraction would do for me other than making me really annoyed about sexual attraction as a vague social construct, while impairing me from communicating any aspects of my relationship to sex that I actually find meaningful or relevant to my life. That’s not quite the same as being an ace who experiences sexual attraction, since my whole view has been shaped by being in that gray area, but hopefully it gives you an idea of the problems with the attraction framework being mandatory instead of optional.
a few reasons my 9 year old dog (who in her mind is just a tiny baby) cried at me this week
this is her btw (very sleepy)
I hope you get all the rest you need. Even if you spent a quieter day and didn’t feel productive, please allow yourself to rest without guilt or shame for not “earning” it. You don’t have to burn yourself out to prove that you need rest. It’s a very human thing to need sleep, to need a break, to need nourishing, to want to take some personal quiet time. Please allow yourself to rest. Even if it’s “too early” to go to bed, even if you spent all day in bed trying to recover from anything. If your body needs sleep, please allow yourself to have it, there should be no rules as to earning sleep. Give yourself a break and rest for as long as it’s possible in your daily life. People live very busy lives that have so many obligations, but if it’s possible for you to take a break and rest, please do, because there is no shame in being tired, especially if you have an illness that makes you constantly fatigued. Don’t push yourself beyond your limits just to prove that you have earned the right to sleep. You already have that right. Give yourself permission to rest without guilt.
i just heard a female voice in my head say “Is this yours, [deadname]?” in a very sweet and welcoming voice and in ny head i saw a young woman with brown hair who i swear ive seen before but i dont remember. not sure why that happened
there’s something intensely traumatizing about slowly losing function of your body below the neck and every doctor you see being like “just do PT” and refusing to uncompress your spinal cord and nerve roots because somehow despite you being homebound with hEDS, POTS, and likely ME/CFS as well, all *you* need is to exercise and lose weight and eat healthy and take these medications that arent effective enough or at all!
like. we’re all looking at the same test results right. my entire neck is fucked guy. it’s collapsing on itself. literally. that’s. that’s what it’s doing. and it’s. pushing on my nerves. and. spinal. cord. at C4-C5. but wait
my radiculopathy is at C5-C6, even before i had a disc herniation there somehow. wait. oh
there is something wrong with this picture guys.
I think everyone who calls themself cripplepunk should take a moment to listen to the voices of amputees and people who have spinal chord injuries. I so often see parapalegia and lower limb amputations specifically listed as like barely disabilities, people assume they cause minimal to no pain or impairment and that people with those conditions are endlessly supported. It’s really not difficult to find content creators who have these disabilities who talk about them in great detail and learn about the real barriers they create. I recommend Para Tara for learning about parapalegia, Sarah Todd Hammer for information about paralysis affecting the upper limbs, and while she’s not currently posting videos Footless Jo has some great videos about her below-the-knee leg amputation and living with phantom pain. Feel free to add more recommendations for resources, especially if you have experienced an SCI or amputation yourself. I personally don’t have either so my recommendations are based on limited knowledge.
I’ve had an SCI for 10 years (C3 incomplete) and I’ve noticed this belief among able-bodied and non-SCI disabled people alike, and it’s incredibly frustrating. Lots of people think SCI means you have an easy disability, which is easily understood and taken seriously. Paraplegics are barely even disabled. All people with SCI should be quiet and let other disabilities have attention because we’ve had all the attention for ages (yes, I have genuinely been silenced in disability support groups because having an SCI meant I was privileged over other disabled people). So here is a very brief overview of how SCI affects the body, because lots of people think paraplegia= barely disabling, that walking post-SCI= not disabled anymore, and most people have no idea what it’s like to have an SCI:
- Paralysis obviously: weakened or absent muscle function below the level of injury. It can be zero movement of any kind, or weakness. Incomplete SCIs are very common, so partial paralysis is common. Personally, all of my paralyzed muscles have some amount of movement and I can walk very abnormally and with mobility aids for short distances. Some of my muscles are 1/5, most are 2/5 or 3/5, and some are 4/5. I didn’t have complete return of motor function anywhere below my injury, but it does happen to some people. For reference, here’s a brief description of strength grading for SCIs: 1/5= flickers of movement (visible twitches or feeling a slight muscle contraction when touching the muscle), 2/5= movement but too weak to move against gravity, 3/5= movement strong enough to move against gravity, 4/5= markedly weak, 5/5= normal strength. If you’ve ever had a broken bone and been in a cast for 6 weeks, the weakness and stiffness you felt immediately when the cast came off is what a 4/5 SCI muscle feels like. Most people have never experienced muscle weakness equivalent to even 3/5 SCI strength.
- Paralysis of trunk and arm/hand muscles: this is poorly understood by many. Trunk paralysis makes balancing extremely difficult. I can’t sit up unsupported, so I need a supportive backrest all the time or I’m leaning on my arms. Quadriplegics can have total paralysis below the neck, or may have some arm movements but not others. Hand paralysis with working arms or only triceps paralysis is common. Any hand-related task is difficult. Triceps paralysis makes pushing a wheelchair difficult. Many disabled people talk about “pushing through,” “borrowing spoons from tomorrow,” “paying for it later,” and similar statements. With paralysis, we simply cannot do that. We cannot go to that place that our wheelchairs can’t go. We cannot get ourselves into that inaccessible car. I can’t count the times where someone has suggested I do something and just plan to rest later.
- Paralysis of the diaphragm and other breathing muscles: common in quads. Paralysis of trunk muscles (specifically those little muscles around your ribs) affects breathing as well. High-level quads (C1-C2) often need ventilators 24/7.
- Spasticity: involuntary contraction of paralyzed muscles. May be general tightness/rigidity, clonus, or other abnormal involuntary movements or posturing. It’s not painful for me, but I’m sure it can be for some. Spastic muscles move with an extreme amount of force. I’ve had a leg spasm and shoot out and hit something hard enough to break bones in my feet. Injuries above T12 typically cause spastic paralysis, while injuries below typically cause flaccid paralysis.
- Loss of sensation: below level of injury. For me, this is impaired but not completely absent sensation below C3 (base of the neck). I don’t always feel pain, so I’ve burned, cut, and bruised myself without realizing. I also have trouble with non-painful sensations, so I might not notice if I’ve bumped or dropped something or if my pants are sliding down or whatever.
- Temperature dysregulation: we’re really prone to heatstroke because we don’t sweat as much. We often feel extremely cold or hot when it’s just slightly cool or warm.
- Circulation problems: low blood pressure (orthostatic or all the time).
- Autonomic dysreflexia: occurs in people with SCIs above T6, due to any sort of below-injury stimulus (bladder full, need to poop, stubbed toe, etc.). Causes various weird autonomic symptoms like sweating, goosebumps, fast heart beat, pounding headache, flushing, and high blood pressure. Can cause extreme high blood pressure leading to strokes and death.
- Skin breakdown: common in SCIs. We have partial or absent sensation in our skin below our injuries. We don’t have that feeling to tell us if we’re sitting in a way that’s pinching something or if we’ve been in the same position for too long and need to adjust. Sitting in one position for too long reduces circulation and makes the skin breakdown, causing pressure sores. This is managed with special cushions, long periods (months, often) of bed rest, specialized wound care, and surgeries. People with SCI often die of pressure sore complications.
- Neurogenic bladder: people with SCI have bladder dysfunction. We almost always use catheters to empty our bladders. Intermittent cathing (inserting a single-use catheter for a few minutes several times a day) is common. Suprapubic catheters (permanent catheters surgically placed in the belly) are also popular. Some people (like me) have a Mitrofanoff channel, which is a surgical procedure to make intermittent cathing easier, where a tube is made to connect the bladder to the belly. Others have a urostomy. These are major surgeries. UTIs are common. It’s not unusual for someone with an SCI to have 10-15+ per year. Infections and kidney damage are common causes of death in SCI. Incontinence is common.
- Neurogenic bowel: people with SCI also have bowel dysfunction. We almost always do a daily/every other day bowel program. This may involve manual evacuation, digital stimulation, rectal suppositories, and/or transanal irrigation or large volume enemas. Some people get a colostomy or other surgical procedures. Incontinence is common.
- Sexual dysfunction: absent or reduced sensation, orgasms, erections, etc. The nerves that control bladder, bowel, and sexual function are all at the very base of the spine, so basically 100% of people with SCI have these issues.
- Osteoporosis: typically below level of injury due to lack of standing/walking, but milder bone weakness also occurs in walking SCIs.
- Chronic fatigue and chronic pain: lots of reasons and presentations in SCI. Positioning issues, weak muscles poorly supporting joints, overuse injuries, and lots of other stuff. All extremely common for us.
- Neuropathic pain: this occurs due to the nerve damage from SCI. Can be mild or extreme and totally debilitating. Can improve with time, but may not completely resolve or improve at all.
- Psychological consequences: PTSD is common among people with acquired SCI. Acquiring an SCI is a near-death experience.
Like I said, I’m a walking quad. For me, this means I walk inside my home with a marked gait abnormality and I fall often. I walk short distances (<1000 feet total, usually) outside of home with leg braces and crutches. I primarily use a manual wheelchair for mobility. I catheterize my bladder 6 times per day with an intermittent catheter via my Mitrofanoff channel, which takes about 5-10 minutes each time. I do my bowel program daily using a combination of manual evacuation and transanal irrigation, which takes about an hour every day. I depend on lots of expensive special equipment to stay alive- manual wheelchairs (primary and a backup), AFOs, forearm crutches, a special mattress topper to prevent pressure sores, a standing frame to stretch my spastic legs, 200 single-use catheters per month, bowel irrigation system, the list is endless. Neurogenic bladder and bowel alone are seriously disabling, and paralysis even more so. I’m quite severely disabled even as an ambulatory quadriplegic who doesn’t have the same degree of accessibility limitations due to being in a wheelchair 100% of the time. This isn’t to say that SCI is the most disabling disability ever or to otherwise compare SCI to others unfairly, just to provide accurate information about a poorly-understood disability.
If you’ve read this far, thank you. SCI is not well understood by non-SCI folks, and I appreciate it every time someone decides to learn about us.
Thank you so much for writing all this. I don’t know if I have an SCI or not, because I’m not sure if my spinal cord compression has progressed that far yet. But I relate to a lot more of this that I would have 5 years ago, and 2 years ago I was assessed at 4/5 on all 4 limbs… =/ It’s worse now, but IDK what they’d assess me as. So, I do know I have quadriparesis.
That said, I hope it’s okay if I give a little shoutout to people with paresis. For anyone who doesn’t know, that’s when there’s widespread weakness - can be all 4 limbs, might not be. It’s essentially between paralysis and abledness, as far as your muscles receiving the input they need to work properly goes. People may not be able to see it, but it’s there, and it’s also not something that can just be pushed through or rested over.
If disabled people say we can’t do something, we can’t do it.
for whoever needs to hear this:
starting HRT doesn’t have to be a huge momentous all-or-nothing decision. you can just try it like you would an antidepressant you’ve been informed of the risks of.
there won’t be any immediate irreversible changes overnight. you can always stop, change your dose, change your delivery system, decide it’s not the right time. you can even microdose if you want to.
you don’t have to tell anyone. you don’t have to announce it if you don’t want to.
stop waiting for a perfect time in your life because it won’t come.
stop waiting to reach a mythical level of certainty that never comes to anyone, for anything.
you’ve been thinking about it long enough. if you have the opportunity, just give it a shot. you’re worth the courage it takes to make a change in your life.
