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The best worst case
Have you ever had brain surgery? I’m guessing for most of you, probably no. Well, I’ve had two.
The first was the grand removal of my skull to allow my squishy brain to breathe or swell so dramatically, as one does, after i flew off a scooter like superman, face planting not so gracefully onto the concrete fracturing my jaw, severing my carotid artery. (See post What The Heckin Heck Happened)
The second was my reunion with my missing boneflap a solid 6 months later. Finally, finally, I never thought I’d ever look forward to a brain surgery so much in my life.
There’s this fun paperwork you have to sign. You know, the whole, this procedure might kill you kind of paperwork… I had my second surgery in my earlier-mid 30’s. Yeah, yeah, we’re all as good as our early 20’s in our earlier-mid-30’s, right? So, i skipped over the small print.
blah blah blah, this might cause seizures, death and bloop blap blap, this isn’t important.
big sigh.
signs name on dotted line.
I WANT MY SKULL BACK, PLEASE!!!!
The important element I skipped over, you know… minus the death part.. was the fact that seizures are a common side effect of this surgery. Not only this surgery, but also brain injuries in general, so the surgery made me a double candidate for epilepsy.
“You probably don’t have real epilepsy.’ A friend of mine said to me when I talked to her about this issue.
I looked at my medication bottle, “yeah, well, the literal diagnosis is Epilepsy, so… I guess there’s that.”
I love being gaslit.
i’m not entirely sure what this “real epilepsy” is that my friend is speaking of, because whatever this demon is that creeps in through my eyes then my neck, and takes over my entire being, it scares the hell out of me and I wish it would just go away.
I was on my way home from an appointment, casually listening to jazz, as one does on a sunny, chilly winter colorado day, and I felt the inside of my left eye begin to spazz, almost like a fluorescent light starting to blow a fuse. I lifted my foot off of the gas, realizing, this is bad. And the spazz moved over to my right eye.
Then into my neck, and my head started to rattle like a baby toy. I’m as alert as ever. I know this feeling. And I don’t like it.
I switch lanes quickly, pulling into the nearest King Soopers parking lot, as far from people and cars as I possible could. I callled my husband. I gave him my location.
I’m having a seizure. I tell him.
The car is parked completely,I’m safe, everyone around me is safe. i’m still on the phone, my head starts moving to the left uncontrollably. I can’t speak. I don’t know what to do. Inside of my head, I’m saying, “WAIT!” repeatedly, but I can’t physically say anything. I keep thinking that someone is coming up behind me on the left side, but no one does. It’s both haunting and isolating at the same time.
i’m in the back seat. I think. How did I get here? I feel sick. I want to barf. or pee. I can’t tell which one is more urgent.
Can someone turn off the radio? Sam was still on the phone with me, telling me he’d be right there.
It’s not the radio. It’s a voice. Maybe I should respond to it just incase… am I dreaming? My neck hurts. My body hurts. my everything hurts. I’m tired.
I’m okay, i think. I really have to pee.”
In the end, I’m a little shook, okay, a lot shook, still a week later. And grateful to have experienced one of my bigger fears with a best-case outcome. I’m grateful to have the type of epilepsy that I do. I have focal/Aura seizures, which give me warning signs- in this case, I had enough warning to allow me to act quickly.No one can ever tell me i’m slow or “brain damaged” because I was sharp that day and drove better than many Denver drivers do on a regular Tuesday, and I was in the middle of a seizure!! I’m pretty sure my case is a rare occasion, but I wanted to tell the story because I know many of my peers share the same fear.
The unfortunate reality is, due to losing consciousness, I’m losing my independence for 3 months and will not be driving. At least spring is upon us, and I’ll get some practice walking and i’ll start flexing my writing muscles again… So here’s my moment for shameless promotion. Subscribe and keep tuning in, because you know I’ll keep word vomiting through this car-less winter!
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I’m not tryin’ to Judge, but….
Listen. “I’m not here to judge., but….” I hear that often, before a sentence of harrowing judgment of someone from an individual clearly afraid of that of what is different from them. This post is coming out of left field, I know. We are not discussing stroke or recovery, but we are talking growth.
Growth looks different for everybody, right?
Someone once told me, in 2016, as the “left and right” began to talk about each other and split apart in each others viewpoints with an Us vs Them sort of energy, “if we start talking like that, we sound like them, don’t we?” I quickly realized how quickly our society was moving backwards.
I’m a liberal person, through and through.
I believe trans people not only have the right to exist, but to be loved, cared for, and receive the healthcare they all deserve and need. I also believe two men and two women should have the right to be married and have children. I believe black lives matter, people with disabilities deserve a lot more, and are not invisible. I believe billionaires should not exist, and their wealth could be distributed to much better causes in our nation. I believe in global warming, and we could each do a hell of a lot more to take care of our planet. And For the love of earth, please don’t fire our scientists.
One of My best friends is a conservative. We don’t necessarily see eye to eye on everything. Does this mean we have cancelled eachother? We hate eachother? We don’t talk for months after the election?
No.
It means we learn.
We ask questions.
We look one another in the eye.
We have an understanding that we don’t exactly understand but we’re willing to. Because there is growth and maturity in our hearts.
She owns guns. I don’t like guns. Are we still besties? Well, of course!
I date ladies. The Bible isn’t cool with it. Are we still friends? Duh.
We are not here to judge. We are bigger than that. If we all hated the other person for not seeing the same colors as each other, we’d be in big trouble. We are in trouble, right? it sucks right now.
No human will ever have the same perspective.
Let’s keep growing.
xoxo
C
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2025: A Note to Self
We’re leaving 2024 behind. What a year it’s been. This is the first year you’ve ever spent a new years eve on your own, and i won’t be the first to tell you it’s empowering as hell. When you can sit, comfortable with yourself, quiet and content and truly happy, that, is when you find true success and somewhere in there, maybe there’s a healed heart. We do have a shattered and broken heart, but we’ve mended it back together with love for ourself, and that is powerful. I’m Proud of you.
This next year won’t be without additional challenges and waves of grief and heartbreak. We’ll continue to be tested, torn down only to have to stand back up again… it’s what we do best.
I hope to find my footing, dance with my shadow, smile at my reflection, laugh with my tears, and fall with grace more this year. I’ll hold your hand every day, love you no matter, dance into the world and embrace the changes we have ahead. That is my wish for us, in 2025.
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Identity.
After a life altering injury,or stroke, like what happened to me in 2021, it can feel like your entire identity is stripped from you. For the last three years, I’ve felt lost, grasping the air of what was; the dancer, the designer, the super wife, the future mom, the life of the party, the ride or die friend.
After I woke up from the coma I had been in, I had no idea what had happened to me, and was very unclear that any damage had been done – I was ready to jump back to work within minutes. I guess my toxic trait is setting unrealistic expectations for myself. After being let go from my dream job in 2021,for being a “liability” – yeah, let that one sink in- once I was released from the hospital, and then let go again, in 2023, from dream job #2, my heart was shattered and I refused to give up on my design dream. Six months of searching for a career, and several positive interviews followed by ” you’re just not experienced enough” dismissals- yes, with 7 years of experience, we certainly read between the lines, and see the disability discrimination there, has made me secretly wonder, in a sea of tears, is it me? what’s wrong with me? Did I chose the wrong career?
NO. NO I DID NOT. I don’t know if you’ve met me or if you’ve been following along for a while, but I don’t give up. If I gave up easily, I’d be dead. Stroke survivors are fighters. This industry has clearly built up a wall for me to climb, and I will.
In 2006, I moved to Los Angeles to pursue the dream of dreams, as a dancer. I began dancing in 1998, an fell in love with hip hop, madly. I started doing it professionally, in Colorado, for the AFL Crush team and the NBA Nuggets as the Mod Squad, around 2003 until I left for LA. I auditioned 2-3 times a day for everything under the sun, from Janet Jackson, to some random pilots, a few music videos, and the movie Step Up 2. I was rejected, by almost everything, except Step Up- I got callbacks! I was so excited, I could taste success!! Callbacks were in Baltimore, so I booked a last minute flight. I crushed the callbacks, and even got to have dinner with the director and two of the actors in the movie, Chris and Adam. I thought this might be a good sign!!!
The next day, I recieve a call from the director Jon himself, telling me, he wants to put e in the movie so bad, but, I look too much like the main female character he already casted. BUT. He’s filming a new series he wants me in. holy exciting!!
WE’RE ON SET. We’re filming. I’m dancing, I jump on my toes ( think, Michael Jackson) POP. My ankle swellls like a balloon. I fracture my ankle so severely, it was nearly broken. the mediic warned me not to walk, let alone dance on it for several weeks.
Jon is holding the Step Up 3 Auditions. “Christa, can you do a reading for me, at least, if you can’t dance right now?”
“my flight leaves in a few hours!”
My chance for success was just barely out of reach.
Let’s go back to 2021. I found out my body is half paralyzed. how am I going to dance again? I always defined myself as a dancer, carried my confidence and identity in being a dancer. When that ability was pulled from me, the haunting question loomed over me, WHO ARE YOU?
Yes, I did teach myself to dance again in 2022. It was one of my biggest goals. But it doesn’t have to be my defining personality attribute. It’s not my life anymore. I am Christa, a fighter, a fierce friend, a coffee nerd, a hopeful gardener, a brain injury community resource, not really a professional dancer anymore, but definitely has rhythm.
When you lose your identity, yes, it’s difficult. You have to grieve through it. I would be lying if I said I wasn’t crying all morning. It’s also an opportunity to start a new. a clean slate. An opportunity for self discovery.
Don’t ask yourself WHO WERE YOU?
more like who do you WANT to be? What are your strengths right now?
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Hey, it’s free.
“Thank you for your kindness,” She said.
A tear found it’s way from my eye to my cheek bone. My coworker is one magical piece of work who seems to see through my, what I thought was thick skin, until Gail came along with her nose held high, and her inflated ego, ready to condescend everyone in her path… spotlight on me. Gail is Karen on steroids.
If kindness is free, why is it so difficult for most people to practice, particularly for many older generations, to the humans working behind counters in the service industry?
I must have offended Gail, by asking her to repeat her order, just once, after her rambunctious children, or grandchildren, changed their minds once, wait, no, twice, actually, no, three, four, errr.. uh… maybe, that, uh, five times. six times! Ahem, seven. Did you get that?
I received an eye roll, a huff and a puff, and an exaggerated, “ONE MUFFIN TWO SCONES, see, three total,” She said holding three fingers in my face. Gross. ” Plus my drink, so four things,” As I bagged everything I could remember, with just one hand, whilst also punching the order into the computer, one handed, still, I asked her one last question, (oh no, the world is over!) Was it almond milk in your latte? I genuinely couldn’t remember. The cafe was packed and I couldn’t hear anything. I got another eye roll. okayyyyy. Sorry I offended you. I guess?
“what’s your name?”
“gail”
checks out.
Usually, I charm my customers with the “I have the memory of a goldfish” line, but that didn’t cut it with Gail, the nightmare Karen.
I know I am really good at my job, most of the time, and pretty good at masking my disability, so good, in fact, that a lot of folks don’t even know I have one. One of my regulars I’ve known for months, was in shock when I told him I was half paralyzed and had a stroke.
So, how can I expect Gail to have any clue or extra patience for me? I’m not the kind of person who likes or needs special attention, so I don’t expect that from a woman like Gail, but at the very least, I’d hope, no matter who she interacts with, I hope she can show them at the very minimum, some genuine kindness.
I was on the verge of tears interacting with that woman, struggling to walk, my shoulder subluxation was throbbing, causing my entire left side to just scream at me in pain. My brain was scrambled with over 100 orders, I was overheating, hungry, and absolutely exhausted- terrified of my epilepsy relapsing.
I’M SORRY I COULDN’T REMEMBER WHAT MILK YOU WANTED GAIL.
Just be nice. It’s free. You don’t know what silent battles everyone is fighting.
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8 Minutes.
Did you know that 8 minutes can change someone’s life, if not save their life?
I stumbled across a video a few months ago from Motivational Speaker and Author, Simon Sinek, speaking about a friend of his who was deeply struggling, and while he was sad for her, he was angry she never reached out. He asked, “why didn’t you tell me?” She responded, “I did, multiple times!” And yet, when he looked at his phone, all of her messages seemed normal, saying things like, “want to come over?” But he was busy doing his own thing, living life, and had absolutely no idea she was struggling and really needed him. He then asked her, “How will I ever know through candid messages like this, that you really need me?!” They came up with a code, Do you have 8 Minutes?
Anyone can step out of a meeting, or simply take an 8 minute break from the floor, to be there for someone struggling. Think about it, was that sales meeting REALLY that important? did those 8 minutes affect your job performance so drastically?
Because, in those 8 minutes, you showed someone at the end of their rope that you cared. you made an effort that no one else has, and this person feels wanted and needed and loved and heard for the first time in a long time. What is more important to you? The sales meeting or your friend’s life? I am serious, an not being dramatic. I have experienced the 8 minute saving grace myself, and have immense gratitude for the friend who immediately sensed my sadness and gave me the 8 minutes I needed. I also watched someone closest to me spiral into a frightening state, and witnessed his spirit lift as soon as his best friend called and gave him those 8 minutes. A life saving 8 minutes.
During the 2020 pandemic lockdown, a lot of people started doing mental health check-in’s. Why did we stop? Just because we’re not locked inside of our homes doesn’t mean our mental health is suddenly and magically better now. People still struggle, especially after a life altering injury. Especially their caretakers. Check on your happy friends. Let’s just start a trend of consistent check-ins, shall we? And Alwaysremember those important 8 minutes.
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Two Edges
Social media is a two edged sword. While it brings a sense of community, and introduces us to life long friends- lookin’ at you, Joe Borges and Mimi Hayes (Amongst many others)- all of whom I wouldn’t have met without my activity on Instagram- It can also be poisonous and start breaking down your confidence, little by little.
I know, we’re not supposed to be comparing ourselves and our stroke journey’s to one another, but it’s nearly impossible to shut off that inner dialogue asking, “why am I not there yet?” When you watch another survivor pick up her water bottle or carry something with their affected hand with ease. I look down at my left hand clenched in a fist. It’s been three fucking years. When will you wake up? Can’t it be our turn? I’m so tired. I’ve done all of the right things. Every exercise, all of the PT and OT that was available to me (thanks for nothing, insurance) everything they told me to do. Why are we still here? why am I still half paralyzed? Why is everyone else recovering and not me? What am I doing wrong? Someone once told me they still had gains after 5 years, and to keep my head up, after I posted a pretty depressing post about my left arm’s lack of progression- the community side of instagram really is worth it most days. Everytime I tell myself I need to take a Social Media break for mental health- just so I STOP COMPARING my damn self to every freaking person ever to exist, I remember the beautiful side of the community. The people I love so much. The people I want to cheer for as they progress, the chosen family I have all over the world that shares a similar trauma and experience that I do, so we’re really not so alone in this afterall. even on our darkest days.
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Easy.
Sometimes, I admit I day dream and think to myself that maybe, just maybe this might be a little bit easier if I was doing this on my own. I had someone tell me the other day, that they needed to “Protect their peace” which was hard not to take personally. This is the second friend I held extremely close to my heart that has dismissed me so easily, as if I were an old childhood stuffed bear with a missing eyeball thrown into the Goodwill bin – yeah, not even The Arc! Straight to Goodwill. Bye Teddy, thanks for the memories.
I’m not a quitter, and it’s not that easy to get rid of me. I’m a noble and trusted friend. Almost to a fault. It’s to a point where, people know they can fall off the side of the earth, and know I’ll be there waiting for them, and I’ll never ask for that $20 they owe me. I’m too loyal, maybe golden retriever loyal. But, it’s something I am proud of. I love my people deeply and am proud of the community and family I have cultivated around me. I’d never have gotten through this recovery without my friends, even the ones that disappeared.
I read recently, a quote that resonated deeply, “People don’t leave those they love, they leave those they used.” I’m strong enough to walk away from toxic relationships, but ache if I am seen as the toxic one. If someone needs their peace, I respect that, to a degree… if my existence or disability is a disruption to their flawless little fantasy lives, then I plan to take up as much space as humanly possible. I don’t think it’s right to diminish your light for other people, and we should not make it that easy for people to walk all over our confidence. I refuse to let someone have that type of power, and so should you.
Stand up, or sit up tall and proud of who the fuck you are, and TAKE. UP. SPACE.
You deserve it.
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I tried Keto for my brain health, and this is what happened.
I’m not a doctor by any means, but I am the only expert of my body. This poor body of mine has been on nutritional rollercoasters since I was a little girl. My parents wouldn’t let me eat anything with hydrogenated oils ( a belated thank you, folks) which in kid language meant NOTHING GOOD. So, I snacked on Barbara’s organic “Cheetos” which I’m pretty sure were made with aged white cheddar and sneaky vegetables, I was only allowed fruit for desert, and sometimes I’d have granola or Grape nuts- I know, right? come on…Yuck, parents!! – for breakfast – no sugar cereal for this kid. I’d sneak over to my friends houses and gorge on Oreos and Cinnamon Toast Crunch- GOD BLESS the inventors of these delicacies. I went to Summer Theater camp – NERRRRD– with a bag of raw almonds and spinach for a snack… everyone else got Gogurt. I guess I was…um, healthy?
In high school, I started dancing professionally, I was chosen to be apart of the Adult Team, as a 16 year old, on the NBA Nuggets Mod Squad hip hop dance team, and the AFC Indoor Football Crush Dancers. They made us wear crop tops, tiny, cheeky shorts, and we had a very specific color to spray tan ourselves to, and a few of my role models on the team were asked to leave due to their “weight” – in my eyes, these women were (and still are) perfect, so seeing them being asked to leave due to some normal, healthy looking muffin tops, made a very strong and unhealthy impact on my 16 year old brain. Body dysmorphia is and was real. I struggled a lot with my own reflection. I was never good enough.
Moving to LA made things even worse. I became borderline obsessive with the food I ate. I wasn’t a skeleton, I still had muscle, but it was not a healthy place to be. At 5’10, I was barely 120lbs, and I was never going to be skinny enough. A modeling agency told me I could maybe walk, and pull off being a plus size model- and we all can imagine how well that one went. YES, HONEY, I WALKED, no, I wasn’t hungry…. For months. I went vegan for the wrong reasons- I thought if I only ate plants, I’d keep the pounds off.
Oh, young Christa.. you silly, silly girl.
Fast Forward to today. I feel brighter, healthier and happier than ever. I took a sharp turn from the way I used to eat. After my brain surgery, I got picky. Things tasted strange- I hated eggs. I didn’t like meat. certain texture made me feel uneasy. It was clear I wasn’t getting the nutrition I needed. Food was not my priority anymore- I lost interest in it. everything was, Meh.
Three weeks ago, I had a seizure in a cafe and fell off of a chair in front of a bunch of skiiers- quite embarrassing, and, OUCH, and, terrifying. I was lead to some research about how the Keto Diet was created for children with Epilepsy in the 1920’s and there was great success. There are plenty of scientists raving about this diet and it’s benefits on the brain. The brain is, 50% fat, anyway. So I guess we might as well give her what she wants!
I talked to my neurologist and asked him if he thought this might be a good route for me, in tandem with the meds I take. He agreed, said I’d be a great candidate as long as I’m open to a full-on life style change… I mean, I’ve changed so much already in the last three years, so bring it on. He put in the referral for a nutritionist that I could talk to to get started with, and I started eating more eggs, avocado and, brace yourself, beef and bacon, (and nuts!) than I ever have in my entire life.
As my body and brain enters optimal Ketosis, I feel a feeling of “coming up” – almost a high, like a glow around my brain. I am energized, alert, and sharper than I have felt in months. My husband ha even noticed an improvement in cognition. And guess what, I don’t want to speak too soon, but we’re coming up on being one month seizure free, ALREADY!!
As I sip on my breve latte, I feel great in my own skin, finally. For the first time in years, or even decades, I can look in the mirror and say, hey, you look pretty healthy. Thumbs up, self. More importantly, for the first time in my recovery, my husband has expressed confidence in my cognition, and that feels better than anything I can express. So, I guess you can say, I’m a believer. I’m a keto girl now. Someone please pass the BUTTER!!
One thing to note: Keto isn’t for everyone. You need to stay hydrated- I drink nearly a gallon of water each day. And it’s important to stay active! I ride my peloton multiple times per week, swim at least twice a week and walk a mile a day. My experience is my own and is not promised to everyone who tries the diet. It’s also extremely important to dedicate time to prep and cook meals for yourself to maintain ketosis- otherwise, you’ll be hungry and reaching for quick and easy sugary carb- filled snacks that will kick you out of ketosis quickly! I am not a doctor or dietitian. If you have a brain injury or epilepsy, it’s in your best interest to talk to your neurologist before giving this lifestyle diet a try!
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This One Gets Personal.
“ So!”
I can tell this conversation is about to suck by the big, bright, eyes and giant smiles,
“ when are you two going to have kids?”
Why does society shove this duty so forcefully down our throats? Why is this assumed on us? Can we please normalize not asking every single woman or young couple this question? What if it hurts? Because it does. It really, really does.
Cue stomach drop and emotional ball in throat.
“ oooh, “ hold back tears. gulp. pause. breathe.
“I don’t know. I’m auntie Christa right now! Maybe we’ll see what the universe has In store for us. It’s just not the right time.”
A sharp look to my mom, “Awww, I’m sorry you won’t get any grand children!” sympathetic Laughter ensues from the family. what a fantastically ignorant comment from a drunk family member. cool, cool.
Hold back urge to scream.
“Can we change the subject please?” I know what you’re thinking. Rude, right? Well, unfortunately, the society we live in engrains this societal norm so deep into our brains that most people don’t stop to think… oh wait, this might not actually be a reality that A. this couple can have or B. this couple wants. That family member of mine was so enthralled in her own happiness of her grandchildren, she couldn’t imagine a life without them… I can’t blame her for that. I’m happy for her.
I’m a millennial, and our generation is in the middle of a baby boom, thanks to the pandemic lockdown. It feels like we’re surrounded by newborns, big bellies and glowing new parents, and don’t get me wrong. I am beyond thrilled for my friends, genuinely. I love being an auntie, with all of my heart and soul.
I always wanted children. I’ve dreamed of that miracle of carrying a little bean inside of my body, and growing a relationship with whoever they want to become. Sam would be the best dad- playful, filled with dad jokes.
The accident changed everything. Not only are we financially drained from horrific US Health”care” – if you want to call it that… But I am in no physical shape to carry or even get pregnant. Can you imagine a hemipeligic pregnant lady?? NO, THANK YOU. I know I say I can do anything, but I’m sorry, not that. So our ship is sailing away, and I’m climbing the age ladder.
A video came across my instagram feed the other day, of a girl talking about being diagnosed with brain cancer in her 20s, and her life being put on pause during treatment, missing out on the valuable life experiences of her 20s. A life coach then went on to speak about grief taking shape in different forms. We typically recognize it as losing a person in our life, like a parent, uncle or grandparent. However, it can also look like grieving a life of our own that we lost, or even time we thought we should have had- and that resonated deep with me. He continued to explain grief like a rock in your pocket- a weight that you feel constantly. Sometimes it hurts, sometimes it’s too heavy to bare. And as time moves on, the weight feels less intrusive. As we help others carry their weight or grief- by sharing our story and inspiring others or letting others know they aren’t alone in this feeling, it lessen’s our own weight.
So, I hope, while this is a hard, and extremely personal post to share, I hope it will bring some peace and awareness to others. If you’re going through a similar, difficult time of grief, you aren’t alone. It takes a village to raise the best types of humans, and we are the village. Yeah Team Aunties & Uncles!!
I hope people can begin to pause, with a little grace, before making assumptions about couples choosing whether or not to have children. You just don’t know what everyone is going through.
I guess, right now, while I’m in no shape or form able to dive into this life of parenthood, I’m/we’re not writing it off completely or giving up entirely. I do not think my body would handle or approve of IVF, but there are plenty of parentless children out there in the world who will eventually need a Christa and a sam, when the time is right.
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The Missing Piece – How A Neuropsych Eval Changed Everything
When I woke up in the hospital, even though I was half paralyzed, I felt so like myself, I didn’t comprehend what had happened to me. I didn’t realize the damage my brain had. I was so focused on the physical side of the recovery, the mental part of it was swept to the wayside.
In rehab, I had been assigned daily Speech Therapy. Speech Therapy is meant to work on cognitive deficits after stroke; things like memory, processing and executive functioning. I had to organize a closet, a garden bed and prove I could swallow food without choking before I “graduated.” My speech Therapist spoke to me like I was a child and I practiced the art of sass and sarcasm on her. She loved me. I hated being talked to like a child. I’M 34 DAMNIT. I hated Speech Therapy. It felt dumb and boring. why am I organizing someone named Debrah’s closet?
I continued Speech in an out patient facility after graduation, because I thought I was supposed to…plus, what’s the harm in exercising the injured parts of my brain? I still didn’t understand why I was required to go. I didn’t really have cognitive deficits.
The second Speech Therapist i met was kind and older than the first one. She reminded me of the old librarian that used to read to us in kindergarten before naptime. She treated me like a child… again. what’s up with this, Speech Therapists of the world?? We worked on memory games, how to count change- all basic stuff I learned and retained in my 10+ year as a barista/ waitress/ bartender around the globe. I got bored, again. Why am I here?
2023. I sat at my desk, stared at my laptop, my inner blue- wheel of death was spinning. I spiraled down the rabbit hole of deep thought. Why am I not contributing more to society? I need to be a real productive human. I can’t create a life out of doom scrolling, looking at other survivor stories, comparing myself to literally everyone else. I have to get out there, live, experience the world, get a job, be a person, have a purpose. That will make me feel like less of a piece of trash.
So, I did what everyone does in pursuit of a job. I spruced up my Linkedin, signed up for Indeed, Zip Recruiter and started reaching out to everyone in my old networks, letting them know, Hey! I’m on the market.
Insert tacky commercial voice over moment:Kick Ass Designer Here, Available to bring your firm to the next level!
Networking does really work, ya’ll, and a friend reached out connecting me with someone looking for someone to join their team. I landed the job, to my surprise, and adored every moment of it. I had always dreamed of this; of being a big time designer in the big leagues. I made it, or, at the very least, I’m on the path to making it, and fuck, it’s really hard.
I loved my job, but I was struggling everyday. I didn’t know how to ask for help, or why I was struggling. I know how to do the work, I understand what’s going on, but I’m struggling, hard. Sometimes, you have to advocate for yourself. Sorry, no… Survivors, not sometimes… this is an ALL THE TIME situation. You are the only expert of you. You always need to advocate for yourself.
I knew I felt off and wasn’t getting the care needed, so I asked my neurologist for a Neuropsychiatric Evaluation, to dive deeper into my brain’s inner-working so I can be educated about what’s going on with me and I can then ask for the help I need and find the appropriate tools to help me participate in the world.
The evaluation took 3 hours. The results lifted an enormous weight off my shoulders. I’m not crazy, I don’t have major deficits. There’s nothing wrong with my memory- why the Speech Therapists focused on Memory is beyond me. My biggest challenge is in Processing. You give me directions then go on a tangent about your great Aunt and her fat Corgie, I won’t get those directions… I’m still processing your damn Aunt. I stay silent at a large dinner party, because I’m soaking in the multiple conversations at once, if you talk fast and a lot, I may not have a fast response time. I struggle with quick decisions, since I’m processing each option in my head at the speed of 1991 Dial Up. I am diagnosed with a Mild Neurocognitive disorder and Post Concussion Syndrome- Ok, Mild isn’t too shabby! I’ll take it. I guess.
I also learned that, at the time of my evaluation, I showed symptoms of severe depression, which makes a lot of sense why I felt so down and isolated from my coworkers, and it was in that time that I showed major decline in productivity and performance at work. I couldn’t explain myself.. I didn’t know what was wrong. I was depressed. It all makes sense now, finally.
I finally have answers. Now I that I have this deep understanding of my brain, and how it’s really working, I can find the right tools to do a better job and make great contributions out there in the world. I’m just upset it’s 3 years too late.
My Neuro Psychologist told me, if she had her way, she would see Stroke survivors first, before anything else, and I wholeheartedly agree and hope that seeing a Neuro-psychologist becomes a standard part of our aftercare. It’s imperative to your recovery, to understand and be educated about your injury and how it affects you and your life. If we don’t know what’s wrong, we don’t know how to ask for help.
I can’t recommend these evaluations enough. The more you know about your injury and yourself, the more powerful you will become and the more fluid your recovery will be. I don’t understand why education isn’t apart of the rehab process. The only people who treated me like an equal and educated me about my body and injury was the OT/PT team– and we wonder why my physical recovery is so strong? Education is everything, ya’ll.
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The Life of Lew Who 