I Am A Young Stroke Survivor. Here's What This Experience Has Taught Me.

I Am A Young Stroke Survivor. Here’s What This Experience Has Taught Me.

stroke

Aly Saxe

I reach my left hand into the bowl of cereal and pinch a few flakes with my fingers. Now bring them up to your mouth, Aly. Into your mouth, not your ear. Success! Repeat, repeat. To someone watching, I look like I’m just a little slow and weak. But inside my head I’m working through a multitude of steps to get that cereal in my mouth.

This is my new normal. Fuck this new normal.

A Normal Sunday

I had a good little Sunday planned. Go to the office for a bit, then rock climbing gym with Matt and the girls, then to the airport for a 24-hour business trip to LA. I was in my car at 9:00 that morning. Going to get gas, then fill a prescription, then to the office. I was barely half a mile from my house when I felt strangely dizzy. I knew something was wrong, so I quickly pulled over. I called my husband and told him where I was. By now I felt very “off,” and I could not control my hands or arms.

By sheer will I managed to call 911. And now I really knew something was wrong. The operator couldn’t understand me as I described where I was. What the hell? I’m shouting and speaking clearly. Why is she asking me to repeat myself?

Matt and the paramedics got there at the same time (I think). They took my vitals. Perfect. I must be having a massive panic attack. I am? But I can’t feel the right side of my body. I’ve had panic attacks, but this is different. The EMTs said I could go to the hospital, but if they took me it would just be a really expensive taxi.

Matt put me in his truck and off we went. By now I was positive something really bad was happening. I couldn’t see straight. The entire right side of my body was numb. I couldn’t walk.

Once we got to the ER, it was a blur. They got me in right away, and an old family friend who works in that ER was my doctor. He called in the stroke team, I had an MRI, and they repeatedly asked me things like the date, where I was, and who the president was. That was honestly the most painful part.

They eventually diagnosed me as having some kind of gnarly migraine. Okay, I’ll take it. Migraine is better than stroke. I was to be discharged. Then one of the neurologists, a stroke specialist, took a peek at my MRI and spotted a blood clot. I wasn’t going anywhere.

The clot was in the basilar artery. I was given tPA. That is some frightening shit. I was taken to ICU for constant monitoring. Apparently, I could start bleeding out my eyes.

Through all of this, I was still mentally sharp. Why is everyone freaking out? I’m fine. I’m here. This is just a blip. It’ll all be over soon. And holy hell I’m starving. Can I have enchiladas? They are looking at me funny now. Yeah, you heard me, enchiladas, stat. Matt suggested perhaps we wait until tomorrow, same with calling my best friend Lindsay. He basically kiboshed both of my requests. Asshole.

If I’m dying, I wanted enchiladas for my last meal and my bestie nearby. But I didn’t die. I did leave that hospital four days later with some lessons learned.

Treat Serious Shit Seriously

The text messages beep-beep-beeped nonstop. Old friends, new friends, people I barely knew. Each person more sympathetic and freaked out than the last. My Facebook post announcing the stroke was blowing up. Apparently, stroke is a very big deal.

The nuero resident came into my hospital room. I forgot his name. We’d been referring to him as “baby doctor.” BD was very excited today. My latest MRI showed where the stroke occurred  —  in the cerebellum. This is BD’s favorite part of the brain, because it’s like a little brain within the brain. He showed me images of the stroke and talked excitedly about how it explains all of my symptoms. Oh, and I have a beautiful brain.

Maybe I should post one of these images on Facebook like a baby ultrasound. Look at my exquisite brain, and there’s a cute little stroke. See it? Right there. Looks like a fucking worm. And that lighter fluid tPA stopped it from becoming a big worm. I had a blood clot abortion. I asked BD how the MRI can show a stroke. You’d think I just asked him how the Cubs won the World Series. He was off.

So I’m fine. Aside from the fact that my body is giving me the finger, I’m totally intact.

My body is not okay. I had a stroke at a young age with zero known risk factors. Friends, family, and people I barely know are losing their minds over this. Doctors at the top neurological institute in the country are getting a little too excited. Logically, I know this means it’s a big deal. I haven’t started Googling yet.

Aly Saxe

Cork boards: the pre-Google

Having been baptized into the world of tech startup, I have gotten into the habit of letting things roll. I’ve had to in order to mentally and emotionally survive. Four weeks of cash in the bank? Meh, I’ll figure it out. Headache for five days? Advil and move on.

I’ve gotten a huge wake-up call to clue in and listen to those around me who are sounding the alarms, because I’m apparently really bad at seeing the “big deal” blinking lights myself.

Right now, the universe is telling me to pay attention to my health. Will I stop pressing forward? No way. But I won’t ignore my body anymore. I couldn’t if I wanted to. That’s what happens when you choose to ignore serious stuff; it smacks you in the face one way or another and makes you look.

Let Go and Have Faith

That first night in the hospital, everyone was begging me to go to sleep. I finally admitted to Matt, my very atheist husband, that I didn’t want to go to sleep because I was afraid I wouldn’t wake up. I had already sent the “make sure Iris succeeds” text to the person I trusted it to.

I knew my daughters would be fine if the worst happened. But I was still scared. There was a lot more to do, more mountains to climb. And something deep in my beautiful brain was telling me this is really, really serious.

And yes, I was worried about Iris. It’s a little startup that’s just starting to bloom. And I was worried about my girls growing up without a mama. I wasn’t ready.

Then I shared with Matt that even if I did wake up tomorrow, I didn’t know how I was going to power through. The last couple years have been pretty tough, and through everything I had enough faith in myself to pull through. I could handle anything.

Now my body had failed me. I couldn’t count on myself anymore.

Then my cynical, atheist Matt said something that was more shocking to me than having a stroke. “Have faith you’ll wake up tomorrow. Have faith everything will work out as it should.”

What?

There’s only one thing I have faith in, and that’s me. Many people mistakenly believed that it was a leap of faith that led me to start Iris. It wasn’t. I put it all on the line because I believed in the market opportunity and in myself.

On my worst days, the only thing I truly doubt is me. I’ve had to overcome some serious head games. Now I had to let go and just believe things will work out as they are supposed to without myself to will it all along?

Yup. Well, this is new.

I have no data yet on how this lesson turns out. But it sure feels easier than trying to swim against the tide. I don’t really feel like I have any other option. I’m not superwoman anymore. (Was I ever?) So let’s see what happens when I let myself fall.

Seize Joy

My mom asked me if I wanted her to bring me chocolate in the hospital. Normally, I’d say sure and nibble on it in moderation. Fuck moderation. Fuck passive acceptance. Fuck yes, bring me chocolate. No, not the Godiva bar you got at the checkout at Macy’s so you could spend enough to use a coupon. I want some gourmet sea salt and fancy schmancy chocolate and lots of it.

I ate all the chocolate. No, I’m not planning on becoming a gluttonous human. I’m just going to honey-badger life like I honey-badgered that chocolate in four days.

One of my favorite yoga teachers says, “We’re here for a good time, not for a long time.” Hell yes, time to start living that.

No more waiting for good things and welcoming them with open arms. I’m going joy hunting.

Be Present

I was impatiently waiting to be taken away for my third MRI when Matt said, “The girls might be here when you get back.” Holy crap, I have daughters. My beautiful brain hadn’t let me go there yet. Yes, I was very conscious of my kids, and how they were getting on while I was in the hospital. But I hadn’t yet allowed myself to entertain the thought that I came close to never seeing them again.

Aly Saxe

The hospital toys are more interesting than mom

I am so aware of them now. I’ve always known Lola is perceptive, but wow, she really doesn’t miss a thing. I always knew Sophie was funny, but hell, she’s a comedian. A performer.

When I’m in the moment, instead of thinking about what I need to do next, and after that, and after that, I see so much more.

How much have I been missing by living in the future?

I would be a real asshole if I didn’t extend gratitude to the many wonderful people who stepped up for me and my little family this week. The well wishes, love, playdates, flowers, food, and stroke jokes have meant the world to me and Matt. We are so lucky, and so very grateful. Letting go is easier when we have friends like these to fall back on.

Aly Saxe

Nothing could keep this bestie away

I am especially grateful to Matt. For graciously allowing me to ease into this new normal the only way I know how  —  kicking and screaming. He inspires me to let go, have faith, and be present. He’s also a natural caretaker. I am humbled by his patience.

Okay, that’s it. It took a lot of effort to type this. And I’ve decided I’m over it. All of it. Stay tuned for a superwoman style recovery.

Aly Saxe

I’m outta there!

This post originally appeared on Medium.