Just because you can't do something, or a lot of things, it doesn't make you worthless.
We hear the expression, "never say can't!". I grew up with this and my parents drilled it into me to never say "can't". They didn't want me to set limitations for myself, put doubt in my mind, and not be able to accomplish what I set out to do.
But guess what? I realized that sometimes we just can't do something. Whether it's physical or mental, sometimes we're just unable to do it.
AND THAT'S OK.
Not being able to do something doesn't make you any less of a person.
Whoever out there needs to hear this, you are valued even if you can't accomplish what you set out to do. You are worth it if you can no longer do a lot of things.
You are valued even when you can't.
When you have a medical appointment, but you haven't walked through the door yet and you're already exhausted.
[id: a white userbox with a pastel pink border, and pastel pink text that reads “this user has hallucinations that are from a physical brain injury.” on the left is an image of a small pink heart. /end id]
a blow to the head at age 29, a decade defined
(I’ve been having thoughts about aging, and healing, and living with a disability - this attempted poem is the result.)
[ID: A poem with art to accompany the stanzas, shown over six images. The art is simple black line art with the exception of the last picture, and the stanzas of the poem are hand written beside each drawing.
today I am 33
the three years I have dwelt in this decade of my life
have been spent healing
The accompanying art shows a line drawing of the back of my head and shoulders. One of my hands comes up to clasp the back of my neck
rehab shouldn’t take years, but it does.
the unraveled brain takes time to heal
The art shows my hand holding up a convergence visual therapy exercise, which is a small card with two black circles on it, each with another smaller black circle inside it, labeled A and B.
to knit neural pathways back together
forge other paths anew
The accompanying art shows a brain, with maze-like straight lines inside of it, that all originate from a single dot. A spiral surrounds the brain.
no one thought it would take this long.
The art shows a pocket watch and chain, lying open so the watch face is visible.
but I am finding myself, finding new ways of living
bask in the sunlight, breathe the air of contentment into my lungs
The art is of a windowsill full of potted plants, many of which are succulents. Some grow up the window, reaching for the sun.
my brain is not yet done
and neither am I
I wonder who I will be
in another three years.
The accompanying art shows my hand, holding a single yellow dandelion. The dandelion and its stem are the only spots of colour throughout the entire piece.
The artist’s signature reads hg 2022. End ID.]
Infatilising someone because of their disablility is an act of hate. If your first reaction upon meeting someone who uses a wheelchair, has difficulty communicating, or otherwise doesn't fit your expectations of a "normal" adult is to treat them like a child, you are a shitty person and you need to learn to be better. This is not a friendly reminder.
Anatomical model of human brain, paper mache, French, 19th century
Blood Brain Changes
Your brain makes up around 2% of your body weight but guzzles around 20% of the oxygen carried via your blood. Unsurprisingly, damage to your brain's blood vessels can have serious consequences, as happens in stroke, traumatic brain injuries and dementia. To better understand what happens in these conditions, researchers present a novel microscopy technique — ultrafast functional photoacoustic microscopy (UFF-PAM) — to image the blood flow and blood oxygen levels (pictured) in whole mouse brains quickly and in great detail. The team triggered different conditions in the mice: low oxygen levels (hypoxia), low blood pressure (hypotension) and stroke. UFF-PAM subsequently revealed rapid changes in their brains. This included the simultaneous constriction of blood vessels and drop in oxygen levels, seen at the level of micro-vessels, as a wave of electrical activity associated with stroke spread across the brain. This demonstrates the rapid, detailed data UFF-PAM can produce for brain research.
Written by Lux Fatimathas
Image by Xiaoyi Zhu and colleagues
Department of Biomedical Engineering, Duke University, Durham, NC, USA
Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)
Published in Light: Science & Applications, May 2022
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As someone with a traumatic brain injury, the idea of this kind of sigil existing is incredibly comforting.
For anyone in the chronic illness community who has experience with accessible private/public transportation, I would love to hear some of your feedback.
A non-profit I work for has a budget for transportation to help people who have had brain injuries live life more independently.
The cheaper and more flexible we can get the transportation, the more we can open up the options for people. I realize this is a local issue, but I figured some of you may have experiences that could help me help others.
You know what I find tough about having a chronic illness? When people say I haven't tried enough treatments or am not trying hard enough to get better. The constant drilling me down saying maybe I'd get better if I tried this or my unwillingness to try is why I'm not getting better, is really hard to cope with.
You know what I think?
Waking up and getting out of bed is enough.
Managing to shower one day is enough.
Crying through the pain but surviving is enough.
Knowing my own limits is enough.
Having the strength to keep going is enough.
Being who I am is enough.
I am doing enough and am handling more than I know most people could.
For those of you out there who feel like you are inadequate, I'm here to tell you that you're more than enough. You are the strongest person I know.
Does anyone on here having any personal experience with brain injuries/head injuries?
It was ten years ago tonight that I had the accident that changed my life. Maybe it was the second impact less than a week later or the poor management of the injury that really did me in, but that was when the whole thing started. It was not my first head injury, not by a long shot, but it was the first I struggled to recover from. In a way, I never really did. And unfortunately, it was far from my last.
I used to be really angry about it. Sometimes I still am. It’s been an adjustment in a lot of ways and caused or contributed to a number of other health problems in the past decade. I’ve missed a lot of work, and my capacity for sports and other physical activities is limited even when I’m not dealing with an acute head injury, simply for safety reasons. I had to retire from roller derby and I know I had the potential to be an exceptional player, and I’m sure I’ll never stop wondering what I could have accomplished. I still cry when I think about it. Then again, I cry a lot easier these days, one of the many perks of a damaged brain.
The injury also forced me to change the way I handle things and even how I identify. I used to put so much stock in being reliable and physically capable, and now I’m that person who sometimes has to miss work for health reasons on short notice. I can’t just push through things the way I used to. But maybe that’s for the best. This entire situation kind of forced me to re-evaluate how I view my worth as a human being and some of the capitalist and ableist views I’d absorbed, and I think I have a healthier relationship with myself now.
I’ve also come to appreciate other attributes about myself that I didn’t before. I always used to place more value on what I could do with my body than what I could do with my mind, succeeding at physical endeavors was very important to me. But with competitive sports mostly off the table I found time for and fulfillment through other interests. If not for this injury I’m certain I wouldn’t have become as invested in fandom stuff and probably wouldn’t have started writing for it, and people have told me my writing has changed their lives. I remember when I graduated high school I said I’ll know I’ve succeeded in life when I have changed someone else’s for the better, so maybe I have succeeded after all even if my life looks very different than I thought it would 10 years ago.
Am I glad it happened? No. Do I wonder what could have been and mourn for the identities and outlets I lost along the way? Absolutely. But if I was given a chance to hit a button and be transported to an alternate universe where it never happened, I don’t think I would. I don’t know that I’d be any happier. I could have easily had some other terrible accident, given my clumsiness. Hell, I could pretty easily be dead, and I think I’d probably still be struggling to accomplish enough to love myself. I feel like I care less now, but in a good way. I’ve learned that I don’t always have to struggle, that it’s okay to admit weakness and ask for help or even just give up if something isn’t working. I’m a lot better now at identifying my own boundaries. I have more compassion for myself… admittedly I owe a lot of that to my therapist and my autism diagnosis, but it’s a work in progress. Anyway, I dunno. I think the injury made me come face to face with myself in an uncomfortable way but I’m better for it, in the end.
I'll probably have to cancel my flight tomorrow because my new prescription still hasn't come through and my medications aren't in their original boxes, since my lacosamide comes in 6 or 7 boxes due to only having one sheet per box.
Worst case scenario I'll NEVER be able to fly because security might want a full prescription sheet which the pharmacy never gives me, and I can't ask for it until I've already received my medication without it.
This war on drugs bullshit hurts disabled people so much more than people who are trying to import/export illegal substances. I NEED my medication and I can't travel without it. Yet I'm refused the ability to bring it with me because "Hur hur it might secretly be illegal drugs!" No, it's a perfectly legal substance that I require in order to CONTINUE BEING ALIVE.
I don’t know about you, but I feel good.
I heard that Pitbull song driving my kids home from Park Day this week and it hit just the right note. I could dance to it forever.
Except, I do know about you, most of you, and it sounds like you don’t feel good. Anxiety is sky high. Circumstances are hard. I’m sorry for that.
But I feel good.
Good, meaning great.
My soul sister is improving dramatically. She’s been cleared for partial work. I warned her to make sure she had light duty, because cognitive fatigue and strain are very real and disruptive. It’s usually impossible to power through and the result is always damaging. Rest matters so much. I’m happy for her and to have that worry scraped from my plate.
Shoot, I don’t know what I wrote in my last post, so I think I’m about to share something for the first time, but maybe not. I’ve started sharing some stuff on IG (same name) so I could be jumbling things up or misremembering. Whatever. The point is my memory function is … not good. There are moments that are positively, bone-chillingly shocking, but
I feel good.
I made a choice that set me free, and if you can ever find a way to make a freeing choice, do it.
It boils down to this: I am confronting the possibility that my cognitive abilities may decline. Perhaps I am already in descent. (I’m not giving up and I’m continuing to pursue both healing and acceptance and accommodations for my disability, so please no positivity pep talks, because you’ll miss my point and make me feel unheard.)
I actually feel like accepting the possibility of decline is a gift. It’s sharpened my focus and unloaded the burden of anxiety. It’s so beautiful when you can see life as it is and know it’s time to love things as they are, not as they could be or once were. Now or never, for real.
The best quote in the world come from Anne Lamott:
What are you going to do with your one, wild, and precious life?
I’ll tell you first what I’m not going to do: all the things. I don’t want to even try. It’s such a waste of energy that never leads to happiness or success. It’s a dead end with one foot leaded on the gas pedal while the other slams the brakes.
Forget all the things.
Here’s another quote, the album title for the first Krishna Das cd I ever bought, which I believe is derived from a Ram Das quote:
A heart as wide as the world.
When I heard that phrase, it was a lightning strike to my very core. Now that’s a life goal, to make my heart as wide as the world. I am so in love with our magical blue planet. We always talk about saving it, but the planet is not in danger, it’s just our species and the collateral damage we take on our way down. I’m an environmentalist and yada, yada, yada, do the right things, but let’s also not forget to open our hearts to the beautiful miracle we live on and in. I’m taking time every day to watch which branches the wind moves, the trill and chatter of the birds, the peekaboo between clouds and sunbeams. I even joined the Cloud Appreciation Society, if that’s not the cherry on the top.
Open, open, open.
There used to be a commercial that had an eager women peering into the locked doors of a department store repeating that.
Open, open, open.
That’s what I’m telling my heart and it feels so good, even when it makes me cry, which happens sometimes. But also, I’m laughing more. How will I spend my wild and precious life: opening my heart until it’s as wide as the world.
And then, I’ll tackle the universe.
But, there’s something else. Another quote, this one comes from me in my twenties, a fierce spin instructor, hollering at my students:
End on Empty!
I told them they could crawl to the locker room, but don’t save any energy, don’t hold back, end on empty. Give it all away.
I recognize and honor my limitations. This is not a call to burn the candle at both ends, but I don’t want to leave words in my heart unspoken, thoughts, unshared.
There have been times in the last year when I understood completely what was happening, but I was unable to communicate. Nobody knew what I knew, what I was thinking. It’s possible that that’s the future that awaits me. But, right now, I can speak. I’m so tired of feeling unheard, unseen. I don’t want to continue to wither away in the confines of my bedroom.
I am too full, not even close to ending on empty, so it’s time to start spilling, spreading, speaking.
So, I am resurrecting my 2020 plans. I was weeks away from launching a podcast, had purchased music and hired a NYC actress to record my intro and everything. If my brain hadn’t failed me, I would have done it, pandemic or not. Probably, it would have been excellent timing. But I couldn’t and I couldn’t launch the books I’ve already written and fledge my business.
In some ways, it seems mad to attempt it now, these tasks require so much detail work and rely heavily on my working memory actually working, but this may be my last best time. Have you ever looked at an old picture of yourself and seen how glorious and perfect you were, but also remember feeling insecure and thinking you were so fat and ugly at the time it was taken? You missed what the camera caught. You missed the moment completely. And now, you’d give anything to look like that beautiful creature with a lovely body, smoother skin, radiant with youthful exuberance….
I feel like that might be where I’m at with my brain right now. Maybe this is as good as it gets. And that’s ok. I’ll take what’s offered, gladly, in reverence for the mighty gift it is. I want to smile from the inside now, not plaster something fake while worrying about how I really look to the outside world. Done is better than prefect, they say.
I don’t know about you, but I feel good.
Traumatic brain injuries (TBI) are unfortunately quite common in humans. Mild cases may only affect your brain temporarily, but other more serious cases can cause long-term complications. TBI can often lead to long-lasting visual impairments like an inability to define shapes, a misalignment of the images that our brain processes from our eyes or a loss of spatial awareness. But why TBI causes these symptoms wasn’t clear until now. Researchers studied mice who had suffered a brain injury (damaged area shown in pink in these brain slices) and discovered that while the primary visual cortex, the region of the brain that processes visual cues, remained intact; there was a significant loss of neurons that were able to relay that information from the eye to the brain. Moreover, this ‘single blow’ appeared to cause permanent damage, but this knowledge is helpful to develop future therapy options including neuron transplantation.
Written by Sophie Arthur
Image from work by Jan C. Frankowski and Andrzej T. Foik, and colleagues
Department of Anatomy & Neurobiology, University of California, Irvine, CA, USA
Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)
Published in Communications Biology, November 2021
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Watching the Squid Game finally, and first of all--I’m sobbing, but also, the fact that the subtitles don’t match the audio, and the show’s dubbed so I can’t even rely on lipreading makes my audio/reading comprehension issues really really bad. What’s going on, everybody’s so scared and sad and angry omgomgomg...
So a while back, I asked @sinfulskywalker about an injured Luke prompt. I thought I would write my own. It's been buzzing in my head lately so it's a bit long :). Some small references to LLOM.
TW: brain injury, infantilism, hindrance to medical recovery, fictional medical knowledge, removing one's self agency, codependency
Vader was still as a statue as he stared at his son in the medical ward of the palace. His baby looked so frail with bandages around his bruised head and a light medical gown covering his skinny body. Vader's fists clenched as his being filled with self-loathing. What was I thinking bringing Luke to a rebel attack?! the distraught father thought.
2 months ago, Vader decided to bring his son with him as his fleet invaded a large rebel base. Of course his little one would not be fighting, but Luke needed to see the weakness and inferiority of the rebellion. He had put his feisty son to bed in their secure suite on the flagship before his forces engaged with the rebellion planet side. The rebels were pitiful and the empire were clearly dominating the fight. However, Vader's heart stopped when he sensed Luke approaching the battlefield. He saw an imperial air speeder come from nowhere and try to support the rebel pilots. The furious father was not sure who shot first. Maybe it was the rebels thinking the speeder was an enemy (as it should have been!) or the imperials thinking a pilot went rogue. Nevertheless, Vader's world stopped when the speeder was blasted out of the sky and crashed to the ground. He was not sure what happened afterwards but when Vader came to himself the battlefield was marred with blood and he was blinking back tears as he held his mangled son in his arms.
Luke's skull was in pieces and his brain was a mess - he was lucky to be alive. Vader had the best medics on the case but even then Luke nearly died multiple times on the operating table and in the bacta bath. The brain trauma was so severe Luke fell into a coma. Vader sat glued to his son's side for weeks, forgoing meetings and even self-care, and pled with the force to save his son. As he held his baby's fragile hand, he promised he would be a better father. Luke would not be leaving the palace EVER again.
Luke was not the same after he woke up. First, the poor boy had trouble speaking. His speech was slurred or his sentences were incoherent. Mostly, Luke stuck to short sentences or unintelligible babbles which Vader found slightly adorable.
Luke's memories were also scrambled. It pained Vader to see his hurt baby recoil from him, babbling in fright. Though, eventually Luke grew comfortable again around Vader much to the delight of the worried father.
Eating became a struggle for Luke. Shaky hands led to a messy and upset little boy. Not much of a problem for Vader. The caring father enjoyed strapping Luke in cute bibs as he fed his baby and chased dribbles down his son's chin. If Luke was fussy about food, Vader also enjoyed bottle feeding his son while tenderly cradling his soft head.
Luke's medicine was no longer necessary. The boy tired easily now and frequently napped. Even though the royal suite was more heavily guarded now, Vader hated having his vulnerable son out of his sight. So he began taking his sleepy son with him to various meetings and other royal duties. It was also a good learning experience for Luke after all. Whenever Luke started to fidget and yawn, the father would gently lower his son into his custom-built hover-bassinet and close the cover so his son could rest peacefully. No one had a problem with the prince being there - but if they did, Vader ensured they were permanently silenced.
With his brain damage, Luke had problems with his force sensitivity. There were moments where everything became too loud and overwhelming for his little one, so Vader found himself often bouncing a wailing Luke, trying to soothe his son. His infantile nature was also more prominent as Luke was more prone to having accidents in this state. To help his son, Vader constructed a force-dampening room in the royal suite full of soft toys and plush seats, lighted by projected twinkled starlight for him. Armed in a pull up and soft pajamas, Luke would lay on Vader's chest listening to his heartbeat as his father hummed softly and patted his bottom.
However, most concerning was that Luke was easily disoriented. And paired with his son's poor control of the force, it spelt disaster. Vader harshly learnt this lesson when he was jarred awake one night by Luke's missing force presence within the palace walls. The scared father panicked and the entire city was put on lockdown. After a fretful search, Luke was finally found in a run-down park giggling, surrounded by feral tookas at the break of dawn. Even after discovering that Luke somehow used force suggestion to escape, Vader still mercilessly killed all the palace guards on duty that night to relieve his boiling aggression. He could not lash out against his confused and innocent baby boy after all. When it happened again, Luke was found sleeping soundly in the palace hangar near a tie fighter. Vader hated to do this, but he resolutely carried his gleeful son to the medical ward. When his darling saw the tracker chip and the other scary equipment, he waved his arms and shrieked in terror. Vader sighed and force lulled his son to sleep for the procedure.
Vader still hated himself for what happened to Luke, but over time he grew to enjoy the change. Luke was now so sweet and well-behaved; Vader felt complete taking care of him. The doctors said his son could maybe partially recover with extensive cognitive therapy but Vader wouldn't put his delicate son through something like that.
On a starry, festive night, Vader diapered his squirming son and prepped him for his night time bottle. His son whimpered and stretched his arms towards the balcony windows but Vader shushed him. "There, there precious. The world out there is too dangerous, my little angel. Best you stay here with Daddy hmm," the protective father sent gentle waves of comfort through their bond as he rocked his son. Luke shivered and sobbed helplessly.
got in a fight with my boyfriend and realized halfway through that he doesn’t have to live in this “worst case scenario” world like i do.
what no one tells you about a progressive disability, as opposed to a stable one, is that it completely changes how you have to think about the world. being autistic doesn’t really affect how i approach dating; i know my brain and my limits and i’m able to communicate those.
but having a progressive brain injury, having a disability that will likely leave me dependent on someone in 5-10 years- i have to think so differently about my relationships than my boyfriend, who is able-bodied.
will this person be able to financially support me? is the risk of this person’s past mistakes too big? i won’t have the means to divorce them if we get married. will i be able to physically escape this person if i need to, with a worsening physical state?
like. my boyfriend gets to just think about whether he likes me and wants to be with me. i have to make sure that i’m with someone who i can 100% trust OR who i can get away from even with worsening disabilities. i can’t be cavalier about it or date for fun.
there’s just so much that i’m realizing about my brain injury. it’s been over a year and i feel like my symptoms are barely starting.