My Stroke Story

Keeley Shantz

Hey y’all! I’m Keeley, creator of this blog, and before telling everyone else’s story, I should probably start with my own. A year and a half ago, I had 3 strokes and been the Lady in Red ever since. This is my story on how this came about…

A Perfect Day 

My story starts on a perfect day in January, 2023. Tuesday the 24th to be exact. The start of a new year, the birds chirping, and groceries in hand. As I’m walking home from Trader Joes on the Upper West side, I think to myself, “Wow I’m truly in the best city in the world. New York City.” 

It’s 2:50PM when I get to my apartment in Harlem. I turn the oven to 450 and get to work on my tilapia. After chopping the garlic, I put the knife down and look to the clock on the stove. 3:11PM. Great! Exactly one hour until I need to leave for work— and that’s when it happens.

Ankle Shmankle

My vision becomes twisted and I start to fall toward the right. Trying to hold myself onto the counter behind me, my body instead folds forward and my face hits the floor. Panic courses through me as I lay on the ground. What is going on?? I try to move my arms and legs but nothing happens. I can’t move. I can’t do anything. The only thing I do know, is that my head is moving, so I look to see what my legs are doing. That’s when I notice that my right ankle isn’t supposed to be twisted the way that it is, but it doesn’t hurt so I must be imagining it, right? …… Right?

Laying on the ground, not sure what’s happening, I do everything in my power to get up. I keep telling my body to move but it doesn’t. Nothing happens. Now realizing I’m able to move my left arm, I try hitting my right leg to wake it up but there’s no feeling, there’s nothing at all. I scream for all 3 roommates, even the dog Nigel. He isn’t home either, I guess. 

Me Myself and I

“HELP!!! HELP!!” I scream. There’s no answer, which doesn’t surprise me since I live in an apartment building made out of brick. After yelling for help what feels like forever, I finally tell myself, “Okay, Keeley. No one is going to help you. You have to do this yourself.” 

Still laying on the floor, I turn my head to look up toward the counter. Where is my phone? Did I put it by the window? Is it in my coat, which is inconveniently on the chair 10 feet away? Is it in my room?

Bingo. It’s sticking out from on top of the counter. Praise Jesus Hallelujah. But how do I get it since I’m stranded on the ground, unable to move?

I struggle as my left arm hauls my limp body up to sag against the dishwasher. Since my head is no longer supported, I hit my head 4 times on the dishwasher trying to see where my phone is. Once I’m propped up against the dishwasher, I take my left hand and blindly reach up to the counter praying to feel my phone. It wasn’t as slow as I thought though, because my phone crashes onto the floor. Hard. Crap. Please don’t be broken.

I throw myself on the floor and grab the phone with my left hand. It’s not broken. Small win today for Keeley. Once I get to my phone, another problem occurs. I have absolutely no idea how to work it. I just stare at the thing. Half my brain knows to call 911 and the other half doesn’t know how to call 911. Maybe calling 911 is too dramatic? One step at a time. Get INTO your phone, Keeley.

How my phone? Yes I meant that.

Surprisingly remembering my phone password, it still takes me three tries to get in because the numbers are blurring together. Now, how do I call someone? Why don’t I know how to call someone? Panic. Breathe, Keeley.

I start clicking randomly for a couple minutes and finally get to the screen of my contacts. My brain feels like there’s a huge rock blocking anything I’ve ever known.

Favorites, Recents, Contacts, Keypad, and Voicemail are what I read but my brain doesn’t understand what they mean, so I start clicking them all. 

Finally, I get to my recents and see the last person I called was Nathaniel. Do I know a Nathaniel? Oh yeah, that’s my boyfriend. I click his name. He picks up after the second ring. That’s my boy. Even though this is happening to my body, I can speak normally. What’s not normal, is what HE is saying to ME. Everything that goes through my brain is delayed. I’m pretty sure Nate told me he’s on his way. Let’s hope so. I hang up.

911-1

Now it’s time to dial 911. After a few more random-desperate clicks, I find the keypad. 911-1 is what I type. Wait, that’s not right. Yes it is. I press the green button. Then I hear, “I’m sorry, your call cannot be completed at this time.” I stare at my phone in total and complete devastation.

No. No, no, no, no, no!!! I take three deep breaths. 

It takes a couple more long minutes of figuring out how to get back to the keypad before finally getting the 911 gal on the phone. I tell her she needs to stay on the phone with me until help arrives. We wait in silence as I finally have time to think about what’s happening. 

 No Way in Hell Ma’am 

While I wait for my company, a thousand things go through my head. Is this what it feels like to be dying? Am I going to be like this [paralyzed] for the rest of my life? I’ll never be able to sit up by myself again. My dream of becoming an actress will never come true. Traveling alone will never happen again. I’m never going to be able to dribble a basketball again. My parents will have to take care of me for the rest of my life. They will have to feed me, take me to the bathroom, and dress me. The oven is going to burn the apartment building down and I’ll be responsible for 50 people’s deaths minus my roommates who are inconveniently not here. 

The 911 lady interrupts my thoughts and says, “The fire department is almost there. If you’re unable to get to the door, they’re going to have to break it down.” 

No way in hell ma’am. 

Time To Get My Shit together 

Even in the midst of my body not working, I know better than to wait around for some dudes to destroy some shit and make me pay for it. So it’s time to get my shit together. 

I try to lift my body up, but I fall over and over and over again. After more than a dozen tries, realization sets in that the middle of my back is in distant and agonizing pain. The little voice in my head says to stay on the floor or I’m going to do more damage. I take a few more breaths and finally look at what my right hand is doing. I haven’t noticed it this entire time and then it hits me in the face. Yes, my right hand hits me square in the nose. What the heck are you doing, hand?

Staring at my right hand gives me realization that it doesn’t even belong to me. I can’t feel it and definitely can’t tell it what to do. Wanting it to touch the floor, it’s hitting the wall. “Go to the right,” I say out loud. It smacks me in the face again. Okay, HAND!!! I don’t have time for your weirdness right now!!! People are going to break down my door and it’s going to cost A LOT of money!!

It’s Go Time Baby

Now here I’ve drawn a map to show you where I was and how far I had to get to the door. It’s 67 feet to get to that door. (yes, I measured it)

At this point, I know that getting to my feet is pointless, so I improvise. With my left hand, I take my right hand and position it in front of me. Then I position my left arm the same way, elbow up. Like so: 

Sometime during my alone time with the 911 lady is when I figured out my left leg is working, so there is more support in my body now. I get in a position where I can push off my one leg and scream, “MOVE!!!!!.”

My whole body jerks forward, even the hand that I hadn’t been able to control. I obviously can’t control how hard the push is because my head goes crashing into a chair. After recuperating from the sting, I do it again: position my right hand with my left hand, push. Again, and again, and again, dragging myself, until halfway to the door when I feel a burning sensation on my right leg. Looking down to see what it is, I see it’s just the water heater burning my flesh off. Although it sounds bad, this is a good sign that I can feel my right leg. I’m starting to get feeling again! Woohoo!

What do you mean?

As I’m about ¾ of the way to the door, a loud buzz consumes the apartment. I look down at my phone and Nate is telling me to let him in.

Of course he has no idea what’s happening, but it makes me want to scream every time he buzzes because my ears are sensitive. Thankfully someone lets him in the building, because he’s now knocking like a mad man at the front door. 

 Another problem arises when I finally drag myself to that door… I can’t reach the door handle. After screaming in frustration for a good couple minutes, I finally reach for the handle with my left arm. It turns and Nate gets in. He picks me up and takes me to the couch to wait for the paramedics. 

Hospital Days 

After another 30 minutes, my paralysis goes away completely and I spend the next two nights in the hospital. Those days were hell on earth. Mount Sinai didn’t have a hospital room for me so I spent a day and a half in the emergency room–all day and night having to be around screaming patients. This was the most uncomfortable I’d ever been. It felt like I was there for a month.

In a span of 48 hours, I find out that strokes caused my paralysis. I didn’t even know what a stroke was.

A stroke is a blocked artery that cuts off blood to the brain.

In my case, one blood clot went through a massive hole in my heart and straight to my brain. The clot was so big that it split into two, causing two strokes. My stroke neurologist found evidence of a third stroke in my MRI that had happened a long time ago.

I asked her why I never felt the older stroke. She said it was located in a “silent” part of my brain, meaning it still caused brain damage but would not affect the rest of my body. I have three places in my brain that is damaged for life. My heart is broken.

Speaking of my heart…

On a scale from 1 to 10, 1 being the smallest hole you can have to 10 being the biggest hole you can have in your heart, mine is a 9. The hole is about the size of a dime. My heart. My heart was never full, never whole. My soul is broken thinking about that.

A couple days after I got out of the hospital, my parents flew into New York from Iowa. My heart surgery was on February 3rd. The device to patch the hole in my heart is called an AMPLATZER™ PFO Occluder. It’s a nitinol metal wire with polyester mesh. I’m really going to have metal in my heart for the rest of my life.

My dad made me food all week and walked me to my appointments. My mom slept with me and held me close. My aunts, Amanda and Sally – who are nurses – kept me up with reassurance and clarity.

The stroke neurologist said that if I were to have another stroke, it would be within the next few weeks. I was scared to death. 

My surgery finally came and guess what my heart doctor’s name was? Dr. Love. Right then, I knew it was going to be okay. The surgery only took 20 minutes and I was awake for the entire procedure. The pop I felt in my heart was the scariest. I saw on the monitor when they popped the device in my heart. And that was that.

After

After my parents left, I went into the worst depression of my life. Most of my first weeks consisted of starring at a wall for hours, not thinking about anything. There is nothing. I am nothing. My heart is broken in more ways than not and I can’t even feel that. I should be sad but I feel nothing.

‘Uncomfortable’ was a big word for me right after my stroke. I was so uncomfortable doing anything. Just living in my own skin made me feel so uncomfortable. The moment I would go outside, I’d have a panic attack and have to go back to bed… and stare at the wall again. If I had another stroke, I’d rather die in my bed than on the rat infested streets of New York.

One night Nathaniel couldn’t take it anymore, the nothingness. He made me come over to his apartment and fed me and held me all night. The next morning, I went to his bathroom and looked at myself in the mirror, and really looked. This took me back to one night in the hospital:

Lady in Red

I had just gotten done with one of many tests and had to go to the bathroom. A nurse wheeled my hospital bed over since I couldn’t walk due to my sprained ankle. On the journey over there, he started singing, “Lady in Red…. Mhmmmmm” and sang it again and again and again, to the point where it was so obnoxious that I laughed out loud. There was a spark of feeling. It immediately went away but it was there.

In the bathroom, I stared at myself in the mirror. There was no bubbly, fun, kind hearted perfectionist staring back at me. There was a girl who had been through hell and back. A girl who had blood shot eyes, greasy hair, black circles under her eyes, someone who now had brain damage, and of course my snot soaked red sweater. But as the nurse outside the bathroom was STILL singing, I saw someone else. I saw a woman who was still standing. A woman who could still laugh through all she’d been through. A woman who was seen, heard. The strongest woman at her weakest point. The true Lady in Red. 

I snapped back to reality in Nathaniels bathroom. There I was was, smiling at myself, and thats when an idea occurred to me. I almost sprinted home.

Here and Now

It’s been a year and a half since my strokes, and after many months of depression, anxiety attacks, and feeling helpless, I’ve realized my strokes were the best thing that ever happened to me. There was no drive in me two years ago, no effort in what I put into my body or did with my life. I was taking my life for granted.

I had three strokes and can walk, talk, dance, and think for myself. Some people have one stroke and die or live the rest of their life in a vegetative state. Why me? Why do I get life and others don’t? I have no idea but I will spend the rest of my life figuring that out. I owe it to the people who haven’t been this lucky. I owe it to myself.

Red signifies passion, courage, warmth, danger, and love. It tells you something big is about to happen. It’s the color you don’t double take but stare at.. and I’ve noticed that whenever I wear it, I’m seen.

But now I have a reason to be seen. To share my story, and to listen to other’s stories. I want to share with the world the events that led up to who you are today and make sure people know that they are not alone. We all have had traumatic events happen in our life. It was awful but let’s switch up the narrative. What did it do for you? Did it bring out the fight in you? The love? The want for something better? Everyone has a story to tell and it’s time to share the passionate, courageous, dangerous, loving you.

I’m here on this earth for a reason, I know it. Three strokes and I’m okay. Three parts of my brain are dead for the rest of my life and I have metal in my heart, but I can still love more than I ever thought was possible in a human being. I’m meant to bring good into into this world. We’re still figuring out how, but for now, I want to uplift women and share their story with the world- the story on what made you, you. Your life is amazing and I want to hear all about it.

You can share your story here.

The First Lady in Red I want to Introduce is Stephanie Fuentes.