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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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Belong. Part 2
When I got my first “big girl” design job, I thought I was on top of the world. This is it, I am on top of the world. I run shit now. I found my rhythm, I found my groove, I was so happy. I had my dream job.
Then… COVID.
What the hell, man?? What is this crap? Sam and I made it work, and the dream job, to our surprise, was basically made to survive a global pandemic. Okay, on a business level, probably not. But on a philosophical level, it really was.. We had a ” do what you need to get your shit done” model and most of the time, we were left to our own devices, created our own schedules, we brought in our own leads, made our own magic happen and reaped the benefits when it made sense. I’m grateful to have had the dream job during the nightmare of COVID-19, because I know not everyone experienced that sort of ease. Lockdown is over. I’m back on top of the world, I have a pep in my step again. I feel really damn good.
And then… CRASH.
WHAT THE HELL, UNIVERSE? What’s up with this? Right when I’m feeling good, you throw this shit covered fire ball at my gut….Er, Face.
I’m sitting at my desk, in my freezing cold office. it’s winter. My office doesn’t have any registers, so I don’t get any heat. The person responsible for designing this house is an idiot. My friend and manager has to deliver the news. I can’t keep working. It’s only been two months since the accident, I barely just got home. I still have the bright blue helmet on my head, protecting my squishy head from further damage. My mind is very slow, I’ve got major cognitive deficits at this point. Somehow I believed I could go back to work, but in all reality, there’s absolutely no way it would have been possible, or safe, for that matter. COVID was still out there, I’m completely immunocompromised, my brain is spilling out of my skull, only protected by a dinky blue foam helmet covered in stickers and a single layer of skin, I can barely form complete sentences, I can’t walk, I most certainly can’t drive. Im officially unemployed. I wiped away the tears and said to myself, “i’m not going to design anymore. This is it.”
And this day will be known as the day Christa Lewis Moritz gave up.
Pause, for dramatic affect. Hold, for audience reaction.
HA! I got you, didn’t I? Come on, You should know by now that those words aren’t even in my vocabulary anymore! I don’t do this “give up” crap.
Fast forward a year. I stepped foot into a fancy commercial firm. It was so scary and intimidating, though the people working there were very welcoming and kind. I think I’ll always consider many of them like family to this day. l quickly learned that, no matter how much a company touts how inclusive they are, it doesn’t mean a thing if you or the targeted “diverse” employees don’t feel a sense of belonging. I don’t know if it’s my reclusive introvert personality, but there was something that made me feel like a super outsider. It was no ones fault, nothing I can pin point, just a strange and indescribable feeling of not belonging there. I had the imposter syndrome of all imposter syndromes and I didn’t know what to do about it. I tried to overcompensate, I masked like crazy, tried to cover up both my cognitive and physical disabilities- which was both stupid and impossible and probably unnecessary, I tried to involve myself in projects, and participate in silly banter with the team but I think in the end it all came out terribly wrong and neurologically exhausted me to a point of making way too many mistakes. I was let go just before the holiday vacations began, and it shattered my heart just as much as being let go from my dream job the year before. Why does this keep happening? Maybe I’m not supposed to be a designer after all. Maybe I’m not cut out for this. Maybe I’m more injured than I realized and I really don’t fit in.
Rejections are tough. And after living in LA for 5 years pursuing a nearly impossible dance and modeling career, I can confidently say they really do make you stronger, but your heart can only take so much, especially as a person with a disability. I feel a little more fragile these days, and not as confident in my abilities, especially after the last design experience. I’ve applied for endless jobs, and even expanded my search beyond design. My confidence sinks only a few points with every rejection I receive, but I don’t give up hope, and I don’t think I ever will. The terrible advice, ” Maybe design isn’t the right path for you” will never be listened to, so save your breath. The right opportunity is around the corner, and I can feel it deep in my soul.
After paying out of pocket (Thanks for absolutely nothing, insurance.) for two brain surgeries among other fun and exciting bills, Sam and I just decided to figure it out, again. we’re good at this. we’re a good team… we can do this! I’ve always leaned on the hospitality industry when money was tight- when in doubt, give the people what they want! caffeine, food, or alcohol! I was scared of my disability, once again. I’ve already been discharged twice because of it. How can I manage a freakin’ hospitality gig as a hemipeligic???
What’s my motto, again?
I CAN DO ANYTHING! IT’S JUST, DIFFERENT THAN YOU.
I stepped foot behind the bar. my stomach in knots.
Customer.
oh, crap. Heeyy. How’s it going? Trying to revert to the old script from 2012.
INSTANT SUPPORT. New Homie on my right takes the pen cap off for me.
“I’ll do a lemon poppy seed muffin to go and a latte.”
takes cup: O L i’m a one handed boss babe.
easy. like riding a bike!
Panic. muffin in bag with one hand???? HOWWW.
homie on the right: i’ll hold the bag! SUPER SUPPORT!
customer notices my left arm: “I’ll just take the muffin too. i don’t even need a bag.” smiles. swipes card. leaves generous tip. customer support. bonus points.
how nice.
the world really is kind, ya’ll.
I think I belong here. What does that mean? I have something positive to contribute to this cafe’. This community. This neighborhood. I feel supported to be exactly who I am here. Masking and overcompensating is not necessary here. I don’t need to fake it til I make it, I don’t have to put on an exhausting show. I feel at home and I’m so grateful to have finally found my way. No, it’s not design… YET, but it’s a safe community in the interim. It feels good to Belong, finally.
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Belong. Part 1
Since My injury, I have been desperate to feel like I belong somewhere. Brain Injury is isolating. Disability in general is isolating. People don’t know how to act around you. Are they offending you? maybe Will they say the wrong thing? probably. Can you even have fun anymore? duh.Try me. Do they help? just ask. Are they supposed to help? just. ask. Are they supposed to watch me struggle and figure it out eventually? yes, please. what’s up with the no eye contact thing? welp. It’s almost like the people you’ve known for years are tip toeing around, unable to be themselves around you. It feels awkward.
I lost a lot of friends in the last three years. Some of which I lost due to circumstances outside of my control , outside of my accident- it’s just life I guess, it sucks and what can you do? Some I lost very quickly after the accident and it was quite obvious to me who my real friends in the trenches were and who the “just for show” friends were. It’s painful to go through, and as I write this, I know I’m not alone. Everyone in the disability community has had to trim the fat, so to speak, and find the people who really matter, and who you can call at 9:30pm when the Grocery delivery person drops your groceries on the wrong floor and you’re exhausted, stressed, and don’t want to ask your neighbors for help because People-ing is just too much to handle and fuck, you just want some food, wherever it is in this stupid building.
Most of the time, that friend, those friends… the ones you lean on the most, are the ones who get you, the ones who have been though, maybe not the same hell, but a similar hell, as you. Enter, my disability community. Year 1 after the accident was intensely depressing. I was so lost. I was told I’d be sitting in a wheelchair for a strong majority of my life, (i don’t do this sitting thing well.) and I’d never see return or movement back in my arm (I’m sorry, never? I don’t like that word, doc. i respectfully decline.) My best friends in the trenches stayed close by, visited often, drove me to my appointments, treated me like my old self, joked around with my like the old days, almost as if nothing had happened. It felt pretty good, but we were still just brushing the accident and disability thing away…it’s easy for you all to pretend it didn’t happen, but my brain and my body is still broken and I have to live with it every single day.
I was extremely lost. This was all so new, I had knots in my stomach. How was I going to move forward in life like this? How do I continue my design career as a person with a disability? My friend from high school who, several years prior, had been in a life altering accident of his own, had reached out, checking in, providing me with community resources, offering to be a friend in the disability community, acknowledging and empathizing with me about how scary and lonely the first year and months can be. I don’t know if he realizes how much of an impact this simple gesture made on me and how it brought me to eventually see and realize the power of friendship and community. Through that same friend, I found myself involved in multiple Disability advocacy events, meeting other groups of people with different types of disabilities, opening my eyes to the big and beautiful and supportive community that we have here.
I had a TBI, then a stroke, yes, and because of that, I am experiencing paralysis on the left side of my body. One of my favorite friends has a Spinal Cord Injury and we both love biking, so we decided… power (and SAFETY) in numbers, so, hey! Let’s create an Adaptive Ladies Biker Gang!! I met some friends who are deaf and they both offered to teach me to sign one handed so I could better communicate with them. A blind climber talked me out of having a fear of heights and into trying climbing and ended being my belay. This is how we in the disability community support one another. Rather than harping on each others limitations, like Abled-folk love to do oh so much, we support one another’s strengths and celebrate them, together.
i love this community and am so proud to be a part of it. Thank you for accepting me.
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Chapter 1.5: Marc, The Origin Story
I roll onto my back. My head is throbbing. All I can hear is beeping and the distant sound of phones ringing, people talking, maybe nurses, and water trickling, almost like a little fountain- it was only slightly relaxing, I later learned it was a part of the ventilater machine. I’m staring at the ceiling. I wish I could fall asleep. I roll over. My am disappears. I can’t feel anything on the left side of my body.
instant panic.
WHERE THE FUCK IS MY ARM?
WHY CAN’T I FEEL ANYTHING?
WHERE DID IT GO?
I sit up as quickly as my tired body could sit. I begin sifting through the layers of blankets. Still panicking, I find a warm, stick nestled underneath me. WHAT IN GOD’S NAME IS THIS? Did the nurses pay some sort of Halloween prank on me? Yes, they did. It was a cruel prank. I pick up the stick. it’s a weird, and very realistic fake arm toy.
What the actual hell is this?
I called my nurse, inspecting the toy, only to discover it’s attached to me and has MY tattoos on it.
My nurse, Kahlo runs in.
“I HAVE AN ARM!!!!!!!” I’m crying, holding my left arm.
Kahlo laughs outloud, probably relieved it wasn’t a more serious call.
Yes you do! You should name it, just so you don’t forget about it.
There are so many directions one could go when naming an arm. I stared thinking….
hmmm… Armando? armmmmmm…. Marrrrrrrrr….. arm backwards is Mar, my nam starts with a C! together, we’re Marc! what a team.
“I’ll think I’ll name him, Marc.”
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Chapter 4: They Said, It’s Time To Go To Rehab, and I said Yes Yes Yes
Continued from Chapter 3
…How did she get here?
A woman appeared to my left, wearing a wardrobe which appeared to be selected for her in an old 90’s sitcom, made entirely of nylon and taupe, blending in to the builder beige walls, her hair, naturally wavy, streaked with silver, the colorado dry-winter effortless static poof quite not doing her not-so-subtle make up job justice. Her stale Nordstrom’s Rack perfume was giving me a migraine. Don’t you know not to wear that crap around us folk with brain injury and severe sensitivity to smell? That is a STENCH, honey pie.
My name is Patricia. It’s time to talk about Christa’s Inpatient Rehab Care. This lady wreaked of Caseworker and spoke to my family as if I weren’t in the room.
I realize I’m only on speaking terms through a dry erase-board, but come on, lady, I’m an actual human being.
Weird, I know. It’s like people with brain injuries and disabilities want to be treated as equals. WHAT?! Preposterous!
With our insurance at the time, we had two choices. Craig Hospital- the top Neuro research rehab hospital in the country, which happens to be right here in Colorado, or Encompass Health, a solid second choice but.. not Craig.
Fast forward one week.
I’m asleep and wake up to Sam fuming. I can hear him fighting with someone in the hallway, but I can’t tell who.
WHO THE FUCK DO YOU THINK YOU ARE??!!!
It’s my mom’s day to visit me. She’s helping file a chipped nail on my right hand that was bugging me. Sam storms in.
“They said its not medically necessary. i’m elevating it to management as best as I can. I can’t believe insurance company’s have the right to dictate our futures like this.” He’s still fuming from the argument yesterday.
They won’t tell me, but i’m not stupid and have started to figure out what’s going on. It seems like my insurance company won’t allow me to go to Craig. Apparently Bright Health didn’t think that being half paralyzed with your jaw wired shut or living life with half a skull in some freezer somewhere and your squishy brain shlooping out of it’s cage, in an extra vulnerable state was not medically necessary enough to go to the best neurological rehab facility within 15 minutes of my house. COOL. Double thumbs, or middle fingers up to you, insurance companies.
Now, we must wait for Encompass to have a free bed for me. in the midst of the tale end of the COVID-19 crisis… our bestie Patricia bursts through the door
GREAT NEWS!!
oh? Is Bright Health less of an evil scam and you’ve actually helped us, and I can get into Craig?
No.
THERE’S A BED FOR YOU AT ENCOMPASS!
This is the first time she’s ever made eye contact with me. WOW. Hi there, green eyes!
I couldn’t believe it. Here we go. After almost a full month of living in this hospital, befriending nurses and the cleaning crew, I am outta here. I am embarking on a new journey. I am about to start recovering. I am going to learn how to walk. I am going to make some serious moves. cue the Rocky Theme! LET’S GO!!! Get me the hell outta this wheelchair! oh, wait… I have to be transferred in it? shit.
we shall continue….
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Chapter 3: The Cherry Ontop
A group of doctors burst in the door. my mom and brother were sitting with me, as sam had to step out to get himself lunch.
“are you the medical decision maker for christa?” a doctor asked my mom, “can we call her husband right now?”
oh, i just love being talked about as if i weren’t in the room. this is fun!
my mom quickly dialed Sam and put him on speaker phone. the doctor started rambling about jaw reconstructive surgery and requiring his permission.
everyone was talking so quickly, i barely followed what was going on.
When i flew off of the scooter and landed chin first, the impact fractured my jaw, which dissected my carotid artery – causing the stroke. they decided to wire my jaw closed to assist in healing the jaw, avoiding further damage to the artery.
The next day, it was our wedding anniversary.four years!! before the accident, we had purchased tickets to see the new Meowolf in Denver with our friends to celebrate our anniversary. Now, i’m in the hospital. i felt extremely emotional. i was so happy sam was with me – even though the hospital isn’t the most exciting place to celebrate a wedding anniversary – we were together!
a nurse came into my room, “ok, are you ready, christa??”
No. I’m terrified.
we rolled through the hall and into the elevator. i was so scared, i peed.
fun fact: stroke patients not only lose function on one side of their body, but, they lose bladder control.
“i just want you to know, i’m peeing.” the nurses eyes went wide and she pushed us extra fast toward the O.R. “i’m really sorry, i’m just scared!” i told her, crying. she was incredibly compassionate, ” its okay, you’ll get through this.” nurses really are the super hero’s of our time.
this is SO embarrassing.
we parked the bed in the OR. Now i get to anxiously wait for this mystery surgery. I can’t stop crying. I just wish this nightmare would stop. Can we rewind to Sam’s birthday and margaritas and the excitment of going to see Kaytranada? Can I just not step on that scooter so non of this would have happened? The OR is freezing. I don’t know if it’s nerves or if these surgeon’s prefer the artic cold while operating on other humans.
Sam brought a mini dry erase board, just incase i couldn’t speak, and one of my best friends gave us a book on sign language- a great opportunity to learn!
both tools were placed on my bed, and i was ready to write a big thank you note for after the surgery on the dry erase board, while also looking at how to say thank you in sign language.
a man with the kindest blue eyes peered around the curtain, “Hi, i’m Caesar with anesthesiology, how are you feeling?”
he looked at me with pity and compassion – i had been sobbing, so naturally, my eyes were poofy and my face was blotchy. “i’m terrified.” might as well be honest.
caesaer explained the procedure, i signed, saying i understood the risks. “its my wedding anniversary!” i exlaimed.
Caesar smiled, “oh you poor thing! we’ll take care of you, i promise.” he made his way to another patient, and another friendly face appeared from behind the curtain.
“Hi!! do you remember me?!” the woman was in surgical scrubs with dark brown hair, square glasses surrounding her dark brown eyes, “i’m Jodi, from Neuro surgery, i just wanted to come say hi and good luck!” i recognized her voice, but didnt remember her face. “i used to dance too!” she said, inspecting my head, “i’m sorry for everything you are going through but you’re strong and young and you’ll get through this!”
my brother and mom popped in behind jodi to say hi and wish me luck.Seeing them made me cry again. we hugged as i was wheeled away.
Caesar’s big smile gave me comfort. “okay, christa, i want you to breath normally and count backwards from 100, “he said as a big plastic bowl was placed over my mouth.
100…99….98….
i opened my eyes.
it felt as if i had braces again. my mouth ached. i felt my teeth with my tongue – theres no way i’ll be opening my mouth again. what a cherry on top of this whole experience. i grabbed my dry erase board and wrote THANK YOU!!!! i flashed it to my nurses pushing me in my bed to my room.
sam was waiting for me in my room. i wrote “happy anniversary my love.” on the board and started crying.
sam pulled out the sign language book and we went through the alphabet together.
In sickness and health couldn’t be more true.
the following hours blurred together – my mom and sam discussed how i can get nutrients without being able to eat.
looks like a straw is going to be my utensil of choice.
sam created a chart on the dry erase board so i could communicate to my night nurses. i could point to the words BATHROOM, PAIN or WATER
seriously, what a guy.
we watched a movie until i fell asleep, then sam headed home for the night.My mom greeted me in the morning with a smoothie.- my only breakfast for the next 4 weeks.
suddenly a woman appeared to my left…. how did she get there?!
To be continued…
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The Stroke Survivors guide to a Hemipeligic Kitchen
My life, BS (Before Stroke) Yeah, I know, we really need to work on that one, don’t we?
Anyway.
My life, pre-accident, was filled with a plethora of multi-tasking two handed tasks. I loved being in the kitchen, inviting friends over for family dinners, GourMonday traditions, Kitchen dance battles with my husband, playing music while I chopped vegetables, pretending I was the next contestant on Master Chef..
A friend once complimented my knife skills and I smiled so big I didn’t even know what to do with myself. oh boy, this is big, I have knife skills. i’m a real adult now!
Cue losing the function in my left arm.
DEPRESSION. DEATH. DESPAIR.
WHO AM I?
I’M A WORTHLESS WASTE OF SPACE.
You know me well enough by now to know I don’t understand the words Give Up. So, I found tools. I should let you know though, in all transparency, that the links that I am sharing are indeed affiliate links, so I will receive a wee-bit of a commission from your purchase (THANKS!) And that commision will go directly toward my Recovery that I’m paying out of pocket for, so you are not only getting some wickedly rad tools that really come in handy for us hemipeligics, but you’re also helping support me and my recovery!! Thank you, kindly 🙂
Enough of that, let’s get to the tools.
- The swedish cutting board First and foremost, my favorite cutting board on the planet. She’s not cute, but she’s efficient. There are Prongs to hold your vegetables in place while your unaffected hand slices, or I’ve used the prongs to hold my toast in place while I butter it or crush avocado on it, The black slider can hold anything in place as needed, be a cheese grader, onion or even a bottle that needs a lid tightened. The bottom of the cutting board has four suction cups on each corner so it won’t slide around. It has changed my life in the kitchen.
- Electric Jar Opener – This is useful to more than the Strokie community! My best friend, who has been diagnosed with MS uses this too. It can also come in handy, okay, no pun intended, terrible joke, for folks with arthritis who have trouble opening those tricky-to-open jars. One press of the button, and bam your open jar awaits you! It’s basically magic.
- Kitchen Mama Can Opener I know I said the last tool was magic, but watching this little bullet shaped fella dance around the rim of your can of beans is literally magical and it brings me so much joy. Typical can openers require two hands and are impossible for us strokies, and if we want true independence, we need to automate that shit… this can opener is everything.
- Pan Holder There is nothing more difficult or frustrating than trying to stir a stirfry or curry on the stovestop with only one hand. Your lefthand unable to hold the handle to stablize the pan as you stir, the pan flying around the stovetop causing a ruckus, your family looking into the kitchen, inquisitively, concerned that maybe you can’t handle cooking after all, after the stroke…. but no no no, you’re so close to independence you can taste it. You just need someone or something to hold this damn pan in place.
- Dysem Finally, the gold medalist.The weird sticky pad my coworkers would look at, and say,” well, that’s a curious mousepad.” Anyone who has survived an inpatient Rehab facility probably recognizes this ugly, floppy, piece of rubber. I use it to open jars- when I’m feeling extra powerful, medication bottles, make up, facial care products – my kitchen sink has turned into my vanity during my bathroom remodel, if you’re wondering, though you can bring this floppy friend with you to other rooms, including your work station! I use it to help me stablize boxes while I open them with box cutters. Very helpful when you don’t have another hand to assist!
I really hope this proves as helpful and resourceful for both caretakers and strokies, or stroke survivors or anyone experiencing hemipeligia, pemiparesis, or the weakness of one side of their body looking to find more independence in their lives and didn’t feel too sales-pitchy or obnoxious. I genuinely want to be a resource for you because once I found these tools, my life changed,as did my families. I no longer depend on my family and husband for everything to survive anymore. My husband feels comfortable going on vacation, leaving me to do my own thing for up to two weeks, which is pretty uncommon in the stroke community. I cook for myself, my family and my friends very often, and it fulfills me entirely! I finally have a taste of my pre-stroke life back, and you know what, it’s absolutely possible for you too.
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Acceptance in the Dark Ages
The other day I was asked what my biggest challenge has been, I answered back, “acceptance,” hearing my best friend’s voice clearly in my head telling me, “Christa, you just need to accept your disability.” I was frustrated by this advice coming from a fully functional and mostly abled person who had no idea what it was like to have their mobility and with it identity stripped from them over night. Sure, just accept it. Seems easy enough. I see my friends with spinal cord injuries, with their foreseeable futures in wheelchairs, friends with amputated limbs, all who have clear cut futures- not necessarily great ones or better ones than I have, but in my mind, when it’s definitive, it’s easier to accept and move forward. When you’re paralyzed from the waste down, at least you know that’s you’re life moving forward and you can make it the very best life you can. That’s probably why my favorite atheletes are SCI survivors- they are fearless and full of life. As a stroke survivor, I’m lucky, to be only partially paralyzed, to have some movement. I can walk, I have one strong arm, and I have one stubborn arm that just won’t talk to my brain or function at all. I have had doctors tell me it won’t ever recover, and some tell me it might. The open ended element of this recovery could be a light at the end of the tunnel for some people, but for me it’s infuriating. It’s winter here in Colorado. It’s snowing, which is pretty to look at, when you’re inside. I’m 8 months away from my 3 year anniversary, and my arm is showing as much progress as the ice melting outside. When does one stop trying? When do we throw in the towel here?
In the same interview, I was asked about my biggest success, I laughed and answered back, “Ironically, Acceptance.” When the clock struck midnight on December 31, 2023, I made myself a promise that I’d find joy in my life, in 2024, no matter what, even if it looks different. Disability, limp, weak left arm, no matter, I will live my life full and find joy. That, to me, is acceptance. I am moving forward with myself, making myself better knowing I may not have full mobility ever again. I could get movement back, and that would be cool, but if I don’t, I’m at peace with that.
The day I choose to amputate my arm is the day I have given up entirely on my arm’s recovery, but if that is what I choose, it will give me some freedom and be a weight lifted off my shoulders… quite literally.
Today, i’m at peace with who I am and where Im at on my journey. I’m grateful this life.
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Chapter 1: Crash. Bang. Boom. I’m Okay! Really, I’m FINE.
Have you ever experienced that string of extremely unfortunate events? you can’t comprehend it all, and your memory of the string of events simply mushes together like baby food – you cant even tell whats what anymore. well, that was the month ofSeptember in 2020, for me.
September is the best month of the year!
in colorado, you’ve got the best patio weather in September, its the month for festivals; music, art, ect. the leaves start changing color…. you get the gist.
september also happens to be the month of my birthday TEAM VIRGO! and also themonth of my husbands birthday, AND our wedding anniversary.
its the best time to get outside and have an adventure. Clearly, we love ourselves a beautiful September.
September also happens to host my strokiversary. yes, you read that right. I, little Lew, at the ripe age of 34 experienced a stroke. yes, i prefer the term experienced a stroke vs suffered a stroke.
i know what you’re thinking.
what the heck happened? i’m a young, dancing health nut- not quite the typical candidate for stroke.Well, Stroke doesn’t discriminate, ya’ll. Besides, its quite the story and truly a string of extremely unfortunate events.
Many of my students may remember my first lesson in floor-work is how to fall. Oh, how i wish i had listened to myself. Rule1: Don’t use your chin as a primary landing pad. This can and will cause multiple fractures in your mandibles, which can and will sever your carotid artery, which might just cause a blood clot to find a home in your middle cerebral artery- a very important artery- suffocating your brain. This, my friends is considered an ischemic stroke.
It all happened quite quickly. It was an incredibly lucid experience. I felt as though I was in a dream and i stood outside of myself watching everything unfold. if i have close friends or family reading, feel free to skip this part if this brings up any yucky trauma.
after i hit the ground, i rolled over on my back, seeing stars and heads of worried strangers standing over me.
I’M OK! i said quickly… i hate being fussed over. I AM FINE! i felt my chipped front tooth with my tongue.
ugh. i broke like, half of my tooth. No photos tonight.
it was my husbands birthday. i could only think about him.i can’t ruin the day!!
My husband and his best friend/business partner ran to me and stood over me. I love my husband but he’s got absolutely no poker face. he looked at me, and I knew it wasn’t pretty. my tooth can be fixed. i have a dentist appointment tomorrow so… whatever…I’m fine. Everything’s fine.
My chin, however was gushing with blood. sorry about that, my dear, carotid artery.
fight or flight.
fight.
i need a bandaid.
i got myself up, and decided to walk to the nearest grocery store. I limped by security, bloody as hell, no one seemed to notice. i had a pounding headache.. You know, those migraines that sneak behind your eyes for pure torture.I limped straight to the bathroom and sat on a toilet holding my head in my hands.
this fucking sucks.
my husband and his business partner/ best friend ran into the restroom with a few boxes of bandages and hydrogen peroxide. i stood and held my chin over the sink as my husband poured the hydrogen peroxide on my gashed up chin. no pain. At least the wound is clean!
Security burst through the bathroom doors.
“we heard there were men in the women’s bathroom!”
ok, so… my zombiesque-self limping through the market didn’t alarm you??? and we’re upset by men in the bathroom that is supposedly designed folks who identify as female? these two men were saving my life.
GET WITH THE PROGRAM, YA’LL.
i was unwillling to ruin the day, so the only choice was to press on. Our friend lived close by in an apartment complex, so i wanted to go straight there to have some water and change to get ready for the evening ahead, celebrating my favorite person’s birthday.
MY headache continued to pound through my eyeballs while the boys bandaged my chinny chin chin.
it was then up to me. Do we keep on keeping on?
yes.
we hopped in a lyft and headed to the concert venue then called our friends to met up. it was at this point that i stepped out of my body and watched myself lose control.
my husband held me, my friend spoke gibberish to me and i slurred gibberish back to her. i leaned to my left, feeling a bit wobbly – i brushed it off assuming my wobble had to do with the latest margarita i slurped down.
as i stood outside of myself watching, i knew i needed help. i told my husband i thought i had a terrible concussion, so he helped me to the nearest medic tent and i was lowered to the ground. i felt my husband behind me and held my best friends hand. i watched, above, as the medic team checked my vision.
how many fingers can you see?
WHAT ARE FINGERS?!?
i continued to float outside of myself, as the EMT in the ambulance asked more questions, took my blood pressure and poked me for an iv pick-line. ouch. my left arm was numb and looked like a wet noodle.
my head hurt so intensely, so they gave me some medicine through the I.V. I felt a cool sensation through my veins and near instant relief. i held my husbands hand and closed my eyes. i watched myself relax, somehow, in the midst of chaos.
i felt myself transfer out of the ambulence. where was i? no idea.
with my eyes closed, i heard so many voices and felt another cool sensation in my veins. more medicine, i guess?
“oh my gosh, she is too young for this.”
“ooooh she has cool tattoos!”
the voices blended together but i didn’t know where i was – even though i was floating outside of myself watching everything unfold.
my eyes were closed, and i was transferred somewhere else… in my mind, i had though i was sitting in a weird inflatable globe; the ones that sit outside of restaurants because of COVID-19. i was lowered and laid back. i looked to my left and saw my dad sitting just behind me, who had passed away in 2012. In that moment, I wasn’t confused anymore, I knew id be completely alright.
i heard more voices; nurses, and Irecognized a few voices; my mom, brother and husband.
They had put me on a ventilator; this machine is supposed to help you breathe but it made me cough and i was unable to speak. My right eye was swollen shut; i could barely see anything.
“wiggle your toes, Christa!!”
“can you wiggle your right toes?
easy.
how about your left?”
Laughter.
“Your other left, Christa”
Apparently i’m not wiggling my left toes..how rude.
I wanted to communicate so badly. I looked to my dad for help and i saw his hands form the sign for i love you in sign language. so i made the sign with my right hand.
my family instantly knew i was present and OK!
As i continued to sleep, I put bodies to the voices i was hearing – for some reason, i had imagined these humans around me moving in slow motion, dancing as if they were in a musical. yes, take in that visual…. west side story snapping around a hospital bed.
I woke up to discover that the right side of my head was rather numb and squishy; because of the severity of my clot and brain swelling, I had the top notch neuro- surgical team in Denver remove a part of my skull called the boneflap; making my brain extra vulnerable and delicate without the protection from the bodies natural helmet, the skull.
“ooooh, Christa, you get to have this super cool helmet!you can decorate it with stickers. ” Yeah, because in Colorado we decorate everything with stickers.
oh boy. here we go. talk about a fashion statement. i get to wear this cutie helmet 24/7. what a wild recovery ahead.
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The Life of Lew Who 