The Story That’s Taken Me 7 Years to Share

Seven years ago today is when I first started to think something was really wrong...

Four days of the worst headache of my life, waking up with various parts of my body completely numb, starting to slur words, worrying about drowning on my saliva, and noticing tunnel vision. I went to urgent care on day 5 and was told to go home and take Excedrin for a migraine diagnosis. Then it all got worse. The pain got so bad that I became less responsive, feeling like I was out of my body, scared to be alone, and starting to say things like "if something happens to me, these are my symptoms..."

On day 10 I finally went to the ER.

I remember sitting in the TriCity ER waiting room for almost 4 hours in the worst pain imaginable, thinking I was going to fall asleep and not wake up. When they finally brought me back and ran all the tests (MRIs, CTs, xrays, bloodwork, etc), they couldn't believe a 26 year old was having a TIA (transient ischemic attack, aka: mini stroke) caused by a Vertebral Artery Dissection. TIAs usually last 24-72 hours before the clot either dissolves or breaks free and a full blown stroke happens. Mine went on for 10 days before treatment.

The hospital care was really terrible that night. After 20 hours of sitting around waiting for next steps, they sent me home with a neurologist referral and baby aspirin. I remember thinking it must not be too terrible, but my primary care doctor thought otherwise when I saw her the next day and instructed me to go straight to Palomar ER if my symptoms got any worse. And they did, much worse.

The doctors at Palomar discovered that I actually had Bilateral (2!) Vertebral Artery Dissections with clots blocking 50% of all blood flow to my brain. I was by far the youngest person on the stroke floor, with every doctor, neurologist, neurosurgeon in the area visiting over the next 22 days. I learned that most TIAs either resolve within 24-72 hours with symptoms only lasting 5 mins OR about 1/3 of them become full-blown strokes. Having a TIA and symptoms for 10 days–without the clot breaking away, heading to my brain, and stroking out–was unheard of. Even with the TIAs that dissolve, about 70% result in permanent damage.

No one knew for sure what caused the bilateral artery dissections…

But the neurosurgeon who visited frequently was confident it was the result of physical trauma to the neck. Vertebral artery dissections are the leading cause of strokes in young people, and they’re most often caused by whiplash or chiropractor neck adjustments. The only thing we could point to was from my birthday the day before the headache started.

We surfed for 4 hours that morning. Hurricane Marie brought some of the best waves I’ve ever surfed and it was the perfect summer day to celebrate turning 27. I remember going down on wave, harder than normal, and coming up with the thought of “Whoa, that was rough!” But I wasn’t hurt and continued surfing for hours. We had a birthday celebration later that evening, so the next morning when the headache started, I just assumed the two drinks I had the night before made me extra dehydrated. It makes sense that I might have gotten whiplash on that wave, but you’d think it would’ve been more noticeable.

There are also some doctors who speculate that surfers might be more susceptible due to the constant looking back over the shoulder (& golfers with the abrupt twisting), but who knows! Not knowing for certain has created some extra worry, but mostly I’ve just become extra cautious with my neck.

A cheerful moment during Sheena’s stay at Palomar Hospital.

After spending most of September in the hospital on a heparin drip and having dozens of tests and scans, I'd then spend the next 6 months outside the hospital but doing the same (except w/ coumadin, aka warfarin, in place of heparin). It took a while for the symptoms to subside and my life was dependent on blood thinners until the clots dissolved and the arteries healed. I dealt with a ton of anxiety, as every twinge of pain, numbness, or dizziness would lead to another CT scan, neuro visit, and a lot of fear.

My whole world changed from this experience.

I was incredibly fortunate to not have any permanent physical damage, but my new perspective on life would remain. Before I was hospitalized, I was very focused on my career and financial growth. Steven and I had been married for 4 years (together for 8 yrs) and wanted kids, but we were in no rush. But over those next several weeks on the stroke floor, I was hit with the reality that I might be on blood thinners for the rest of my life, a stroke could happen at any moment, and that the physical stress of delivering a baby might kill me. Also, while on blood thinners, the very things Steven and I enjoyed doing together (surfing & rock climbing) were too risky. And no more leafy greens. Basically everything we did to keep ourselves active and healthy had to stop immediately, at least for me.

But none of those things mattered.

The only thing I really wanted was to have a baby. I think it was the fear of it not being possible or that I might not get the chance to (if I passed away) made it the only thing I really wanted.

I spent the next 5 or 6 months in a really weird place. I was out of the hospital, taking Coumadin daily, blood checks every few days, dozens more CTs and MRIs, meeting with lots of specialists, super paranoid about every sensation, hyper controlling of what I ate, afraid to be alone, not exercising enough, confused about my career, future, and what I wanted. I'm certain I was a giant pain in the butt to be around, but I don't believe anyone understood what I was going through.

There were moments of clarity, though.

The big one was that I was going to go after my dream of starting my own business. I was always too scared to go for it since there were no other women agency founders I knew of (SEO was a very male-dominated space), but the saying that you never know when your last day will be was very real for me.

I took some time off work before making the final decision. It honestly didn't go down well with my employer, as they took very good care of me through this whole ordeal and expected me to return. But I had to go after what I believed I was being called to.

Within a few months, my solo consultancy was at capacity. I was amazed by how well everything seemed to be working out, despite still having to be on medication and frequent medical checkups. We even asked my neurologist if it was safe for us to get pregnant and she gave us a green light. Woohoo!

Fast forward a few months and I'm back in the hospital with the 2nd worst headache of my life, now on day 6, but without many of the other stroke or TIA symptoms. I was much more calm this time around since I knew the blood thinners would (or at least should) keep me alive even if I had another mini-stroke. They ran all the tests. Again, with all the specialists going out of their way to see me.

This time the main doctor came back with a big smile and said, "You're pregnant!"

Steven was ecstatic, but I knew it wasn't true. About a week prior, I had a very unusual and heavy period that kicked off the following 6 days of what I thought was another TIA. The gush was unlike anything I'd ever experienced, and it was in our car on the way to a rehearsal dinner for our friends' wedding. It was also the same day that I had a big win professionally and was getting a ton of attention for an article I published in response to a conference I attended a week earlier. Talk about a roller coaster of emotions!

They took me back for an ultrasound, where the technician confirmed that I had miscarried. The doctors were confident that I should not have still been on coumadin after all imaging showed that my vertebral arteries had healed, and that the medication was likely what caused the miscarriage. It was so bizarre leaving the hospital feeling thankful I didn't have another TIA and completely crushed at the same time.

The next week was super painful, physically and emotionally. We kept my miscarriage private, as I thought that convincing myself that being so very early into the pregnancy (I was only 1 or 2 days late) would somehow make it easier... almost like it didn't really happen.

Then, while still recovering (aka bleeding) from the miscarriage, we went to a family gathering where a family member, who presumably was trying to understand why we didn’t have children yet, said the most hurtful words to me:

"You're not really the mothering type, are you?"

I know this person didn't mean harm, but this person's words were so painful to hear. I was hurt and angry and just wanted to punch my fist through this person's face. Looking back, I sort of wish I would have gently let them know what I was enduring in that very moment and encourage them to reconsider comments like that one.

Let this be a lesson to those reading who think it's okay to ask someone about their hopes/wants/plans for bringing a baby into this world…

You guys gonna have kids? You guys want kids, right? How many kids do you want? Do you want a boy or girl first? Alright, you have 1, when's the next one coming?!

NEVER say or ask these types of things to anyone! I don't care how long they've been together, how old or young they are, or how many children they have. It’s none of your business and can be incredibly painful for the recipient. You have no idea what they might be going through. You might just be talking to someone who is in the middle of miscarrying their baby.

The next few weeks were indescribably painful and nothing really helped. But I was hopeful since we were able to get pregnant right away and then being off coumadin meant we should be good.

Thankfully that was the case and within just a few weeks I found out I was pregnant. I surprised Steven with the news as soon as he got home!

We kept the news private for about 4.5 months, partly due to the uncertainty after having a crazy year of medical emergencies, but also because it was fun! My pregnancy was completely normal and healthy, although I was considered “high risk” because of my TIA. Then week 34 arrived. (Stay tuned for the story of our daughter Lillyana’s 6 week early arrival, NICU stay, and all the highs and lows of being a new parent of a preemie baby!) We feel very fortunate to have become pregnant so quickly, but knowing the very real and raw pain that follows a miscarriage makes my heart ache for friends dealing with that type of loss.

While I recognized my TIA/mini-stroke as life-changing from the start, it’s taken me many years to revisit the whole experience and be able to recognize all the good that came from all the trauma. There was a lot of uncertainty surrounding my diagnosis, as I wasn’t a typical TIA case because mine lasted for an unheard of 10 days before treatment and I wasn’t a typical stroke survivor because the clots thankfully did not make their way to my brain. There’s no way to describe it other than an absolute miracle.

Sharing all this is part of that journey towards healing…

Whether it’s being open about miscarriages to help remove the shame and stigmas associated with the topic or it’s encouraging others who have experienced medical events that turn their life upside down. There are two main lessons I’ve learned from these hardships–first, that trauma survivors are incredibly resilient. “What doesn’t kill you makes you stronger” can be very true if you have the right support to heal from the traumas. And secondly, that the ability to relate and empathize with others by being transparent about trauma is a full-blown super power that the world needs more of.

This year feels exceptionally hard, as so many around us are suffering. Childhood cancer, miscarriages, infertility, and failed IVF, deaths, divorce, job loss, COVID, loss and evacuations from fires and flooding, social and political chaos... Meanwhile social media is full of people continuing to share as though life is picture perfect. I get that we can’t just focus on the negative, but what if we were all a little more vulnerable and real about our suffering? What if social media showed more of the hard stuff? What if we had a community that supports each other through the hard times? I imagine we wouldn’t feel so alone, depression and other mental health issues would decline, and more people would seek professional help that can save their life.

To close, I just want to encourage you to share about your hurts and traumas. Let God shine his light on the shame and guilt that grows in darkness and allow him to use your story to comfort and give hope to others. Surround yourself with people who want to support you through your pain and be open with them when you need help. If you don’t have people like that in your life, reach out to a church who can connect you with the right support. You are not alone in what you’re facing, but you will feel alone and defeated if you try to go at it all on your own.