My Ride with Moyamoya

In 2019, Henry and I totaled our car on the BQE. We held up traffic on the Kosciusko Bridge for over 2 hours while we waited for police to show up. What I remember the most about that night is getting home and being unable to sleep, while Henry was next to me literally incapable of keeping his eyes open. I think I slept for all of 2 hours that night, and when I tried to get out of bed, the world was spinning, I had a pounding migraine and I couldn’t move my head or neck. 

Henry helped me get to an urgent care, where they took an X-ray and saw all of my cervical vertebrae in one perfect, straight line. There’s supposed to be a gentle curve, in case you slept through anatomy class. Fast forward through several months of terrible PT, intense acupuncture and a lot of MAT, we had found out the hard way that I had suffered a severe concussion and TBI, had three bulging discs in my neck and had lost (and since regained) use of my left arm. The concussion severely impacted my memory. We saw a few neurologists with no real answers. Henry and I accepted it for what it was, and chose to move on with our lives. Soon very violent anger outbursts started… and then we found out we were pregnant with Lucy, and a lot of life started to happen very quickly. Lucy was born during the pandemic. Access to doctors or medical advice was limited. 

I think it was very easy for Henry and I to blame any neurological issues I started experiencing on being a new mother, living through a pandemic, losing almost all of my business overnight… Life is always going to be stressful, I think everyone can attest to that. We were trying to make the most of it. Looking back on it all, I can see moments in time where I wish we would have paid more attention, or made a different choice. A solo training day after Maxine was born left me in such a high state of physical stress, my body collapsed on the floor in a fit that felt borderline seizure, at the minimum some of the wildest muscle convulsions I have ever experienced in my career. I called Henry after I had regained control of myself, mostly to cry, and vowed to never workout alone again. Then we moved to Cincy, and my neurological issues blew up. What felt easy to pass off as exhaustion or postpartum troubles were no longer ignorable. Full blown plate breaking rage, delusions, loss of hearing, loss of word recall, a 24/7/365 headache that was never less than a 6 on the pain scale… things were ugly.

I was driving in my car with all three daughters and our sitter when Lucy and I had one of our more recent episodes, where I thought she was choosing to whisper, and was saying to her quite loudly, USE YOUR STRONG VOICE PLEASE! I looked at Kylie, smirked and asked: I mean, you can’t hear her, right? To which she grimaced and said: actually… I can. F**k a duck. Okay, I thought. I’m just gonna need hearing aids. Worse things have happened. I can do hearing aids. Well, it turns out that hearing loss from a TBI means that when things get too stimulating, your brain shuts it all off. Hearing aids won’t fix that. The ENT wanted to be thorough, so he ordered an MRI to rule out any tumors. We got the results - no tumors. A huge sigh of relief! It’s a nice thought, but no dice. The MRI saw some very weird activity on the right side of my brain, and the ENT referred me out to a neurologist, who then asked me to do a lumbar puncture, a lot of bloodwork and a different kind of MRI, an MR Angiogram, which would look at the blood flow in my brain. I begrudgingly obliged. I am absolutely a pain in the ass patient. Someone I love very much corrected me when I said that. She said: No! You are an informed patient. And that sounds a lot better than being an asshole! Ha! 

When Henry and I returned to the neurologist’s office to hear the results, I think we had both assumed he would say we need to do more testing, or that brains are weird and he doesn’t have an answer yet. Instead he told us that there were no inflammatory markers in my spinal fluid, no malignant cells, my body was fit as a fiddle. He then proceeded to say that my brain was not. And that’s when he told us about Moyamoya.

Hearing about a confirmed diagnosis brought such immense relief. I have been walking around for years feeling like a stranger in my own body. To hear that there was solid evidence of something malfunctioning in my brain, that isn’t cancer, isn’t a tumor, isn’t an autoimmune disease, but a simple hardware problem? I can handle that. There are three things that make this disease scary. The first is that looming threat of brain surgery. Of course no one wants to endure that. The second is the cognitive issues this disease creates. The longer things go undiagnosed, the worse my symptoms became. And thirdly, the idea of having a stroke sounds worse than death to me. 

When I was in college, all I could think about, obsessively, were two thoughts: where are my cigarettes? What’s the next play? I was a ‘eat, breathe, live’ for stress kind of gal. I was a double major with a minor. I couldn’t help but be busy every waking moment of the day. Well, it was either be busy or be drunk. I love(d) art. I did everything I could to be as much of a dirty hipster as possible. I smoked, I drank, I got the tattoos, I moved to Chicago. I felt invincible. Imagine how good it felt when I landed a gig working on a play and helping it travel to NYC? I thought I was flying. In New York, I was still obsessed with stress. I just couldn’t help myself. But thankfully I had already quit smoking, and drinking wasn’t far behind. Just today my mom was telling me that almost all cases of Moyamoya are diagnosed after the patient has had a stroke. I think God taught me to be obsessed with stress to learn discipline, dedication and a willingness to be uncomfortable. 

Most of us aren’t.

In my twenties I quit smoking, quit drinking, became a full blown athlete, changed every single bad eating habit for good. I prioritized sleep, water, longevity… I was given one major skill from God, and I absolutely believe it is because of my work ethic that I haven’t had a stroke yet… And God looking out for me every step of the way, whispering in my ear: trust me, let it go, let me have it. Choose me. 

I have Moyamoya disease. The cerebral angiogram on Tuesday confirmed that on the right side of my brain, its at the most severe stage it could be at, a full ossification of the artery. There’s barely a trickle of blood flow getting through that bad boy. My surgery is scheduled for March 10. That’s 25 days from now. But it’s all going to be fine, because God’s got me. 

See you on the flip side, y’all.