My name is JoAnna Stephens. I am a storyteller, an artist, a futurist, and I have brain cancer.
My biggest fear has always been being perceived as crazy. Living in a world I am the only one in agreement with. Being completely isolated in my own brain with no one to share my experiences with. It’s funny how your biggest fear is generally the thing you can never run away from. Fear must be faced. Either you get in the ring with it and duel it out, or you don’t.
For the better part of this year I’ve gone down a journey that has been less about my brain cancer and more about facing my fears. What I’ve learned so far, is Love begins where Fear ends.
October 16th, 2017 was the day I found out I had a brain tumor. I found out when I got a text message from a woman I didn’t know who claimed she was my fairy godmother. She was insistent that I go to the hospital that night, that I had the chance to turn my life around if I went immediately. I googled her number to see if anything came up and in fact it did. Her picture popped up and I remembered her from 6 months prior when I ended up in her shop on a girl’s trip. I was with my friend Amanda and she wanted to stop in. The owner wasn’t around, and Amanda’s phone had died, so she used mine to call and leave her a message. That was the closest I got to meeting my fairy godmother at the time.
I’ve been prone to migraines the better part of my 20’s. I always considered it a hereditary thing seeing as my dad gets them. I knew one was about to come on when my vision went dark in my left eye and lightning streaks would blind me. Then I’d go lay down until it went away. Yes, I was blacking out whenever I stood up, but I also considered that bad circulation, you know, because I’m tall. Occasionally I would lose segments of time and feel very confused for a while but that’s because I day dream. I’m creative, you see. My sensitivities to foods were becoming more apparent, I could tell you exactly what would give me a headache instantly just by looking at it. That was just my taste buds changing though. My sense of smell was incredible. Some smells instantly would give me a migraine, other times I’d be overwhelmed by smells that came out of nowhere reminding me of something from my childhood, like I was constantly chasing down a memory that I could never quite catch.
But the truth was I felt sick that night. More than sick, I felt toxic. I couldn’t drink enough water to flush this one out. I didn’t know what was wrong with me. Maybe I had meningitis and that’s what she meant by the text, I’ve heard that’s rough. I drove around late at night looking for an open Urgent Care that took my insurance, but no such luck. My only option at that point was the emergency room.
So, I picked up a willing friend of mine to come with me at 11:00 at night to the ER to prove this woman wrong and put my mind at ease. The longer we sat there waiting to be checked in, real emergency cases started to come in. I started to doubt my legitimacy of being there, so I spent my time trying to come up with a convincing reason to be in the ER with just a headache, you know, besides the whole receiving an anonymous tip off from my fairy godmother to get my brain checked out. I kept coming back to the meningitis thing, that sounded more convincing than the truth.
My desire to prove this woman wrong was the driving force of me getting to the emergency room, but soon after reality hit. The nurse started injecting me with drugs to ease my headache. I thought I was ready, but I wasn’t. I don’t do well with needles in the first place, but for some reason it was like ice in my veins and it shot straight to my heart. In that moment I knew there wasn’t any going back. I freaked out. I didn’t have an undo button. I looked to my friend and was shaking my head and I started hyperventilating. I couldn’t breathe, I was blacking out, they laid me down and put an oxygen mask on me. I didn’t like feeling like something was wrong with me, and I didn’t like feeling out of control about it.
4am: Doctor #1, out of soon to be several, came into my room, woke me out of a groggy sleep and asked me if I had been having seizures. Apparently, there was quite a bit of swelling going on in there. He kept using the word mass, and at the time I just couldn’t wrap my head around it. Mass, what does he mean by mass? He showed me my CT scans and tried to explain that this mass was the cause of a large shift in my brain hemispheres and was causing a lot of problems. I could see it, I heard him, but it just wasn’t registering. I only had two thoughts in my head, “Ok, so crazy lady was right” and “when can I get the hell out of here, I have a lot of things to do in the morning.”
It took several doctors and a lot of convincing that I wouldn’t be leaving that hospital anytime soon. I was adamant that I be let out. Nope! See ya later! I didn’t want to face it. I didn’t want someone going into my brain and moving things around, brain surgery sounded absurd. It all happened so fast it was comical to me. Someone came in to go over all the potential outcomes with me, from losing all motor function on my right side to losing speech entirely. At that point, I just laughed and said, “cool, so I may need to relearn English, where do I sign?”
Those 4 days in the hospital prior to surgery opened me up to receiving love in a way I never knew before. I never knew how much love was actually in my life until I truly needed it. I had to call my parents, which was the hardest thing I’ve had to do, to tell them I needed them to come down for my surgery. They were there the next day. My room was a revolving door of friends and family and flower deliveries. I met with all my doctors who were still giving me vague and clinical answers for everything, but I felt safe and taken care of. I finally surrendered to it all, and the night before surgery I asked to be alone. I was actually happy. I was content with any and all outcomes. There was a light that was with me, there was an abundance of love, and there was a knowing that something was looking out for me.
My boss gave me great advice before I went into surgery. He told me to focus on being the director of my own movie. “When they wheel you in take in everything” he said, “from the costumes to the set design, notice everything and create your own story about it.” I did those things, and before I knew it I was out.
I can’t explain what happened to me when I went under, but it was different than the second time. There are no words or imagery I can use to explain it other than I felt deeply reconnected to something. I felt everywhere and nowhere. I felt light, I felt love, and when I woke up I felt changed. I gained something, and I lost something. I lost a lot of doubt, and I gained a deeper clarity about my life. It took a lot of time for me to process what this experience was. I felt heavy being back in my body, I can’t explain it any better than that. I felt deeply homesick, but I wasn’t sure what I was homesick for.
Fear is an innately human experience. What we are is Love. We either attune to this frequency of Love or we attune to fear. Love is all around, but we get in our own way sometimes and that’s ok. Perhaps that’s the lesson we are all learning at this time; our planet needs healing and I believe that starts with facing what scares us the most. I’m starting to see the divine purpose in everything that has happened to me. I care less, and I love more.
I’ve told myself this lie my whole life that I’ll never fully be understood, and it’s best to keep some things to myself that could cause a disagreement. I’ve been told I’m wrong enough times that instead, I’ve actually become a really great listener. But I’m not a go with the flow person. My ideas have value even if they aren’t popular. I’m in the business of creating the future and it took a brain tumor to wake me up that this lie I’ve been telling myself no longer serves me. I am starting to see, that sanity is actually when you no longer have anyone left to ask permission from to be your true self.
6 months after my first surgery, I had my second 3 month follow up MRI. I knew something was wrong when I received a phone call the next day from my oncologist’s office, he needed to see me right away. There are few things I hate more than waiting. I prefer my bad news fast. I set up the appointment for later that day and prepared myself to go in and get the facts and not succumb to the fear.
Within three months the tumor came back more aggressively than before. They presumed it had become a grade 4 glioblastoma and it was now the size of a lemon in my left frontal lobe. I would need to do surgery again to remove it. I asked all my questions and kept a cool demeanor, but it was surreal. Time stops, it feels like being in a vacuum. I was just starting to wonder if it was all just a dream when suddenly the doctor asked what I was thinking about. It snapped me back to reality. I paused and replied, “… I guess I’m trying to wrap my head around having surgery again.” He hugged me and said he was sorry I had to go through this. It was compassionate, and yet there was an unspoken undertone that he thought I was dying. In that moment I decided I was going to prove him wrong.
I’ve sat with death often. It’s something I think everyone should do because it teaches you how to live life. Oddly, brain cancer has never stuck with me as the thing that will take my life, in fact it’s opened me up in a way I don’t think any other scenario would have been able to.
The paradox of the brain is it uses itself to learn about itself. I see technology in much the same way actually. We are creating outside of ourselves, that which will lend itself to us co-creating our own evolution. Imagine the brain as the hardware and the mind as the software overlay. I believe all information past, present, and future is already known outside of us, but the brain only takes in that which we are ready and able to receive. This I’ve experienced first-hand, what with me trying to grasp the concept that I had a brain tumor when all I could think about was my dog needing to be walked, and then again when I experienced my first mini-seizure. The best way I can describe it is wiping your faulty hard drive and needing to reboot your brain. Give it 5 minutes, (or 20? time stops so it’s real hard to tell) it’ll slowly start working again.
The mind however, is not locked inside our body, it traverses other realms when we fall asleep for example. This was very important for me to actually differentiate for myself because the second time around I knew what to expect so I needed to go in prepared. I needed to know where I existed; the “me,” my energy, my soul. If things went terribly wrong and I became a vegetable I needed to know I was still going to be me in some capacity. This, and several other questions which I would otherwise have never asked myself, (such as “what is reality really?” when considering I could very well be hallucinating experiences) became such an intriguing journey for me in understanding our collective human experience.
If we are each creating our own reality, which in so many words I believe we do, why are there things in our own personalife we don’t find ourselves worthy of? Why would we not consider ourselves worthy of Love? Of money? Of abundance? What are the biggest lies we tell ourselves?
The night before my second surgery went similar to my first. I asked to be alone and I was overwhelmed with tears and laughter that came out of me from the complete love for my life that I felt that night. If I could get through brain surgery, not once but soon to be twice, with as much joy as I felt in that moment, I knew I could do anything. Absolutely anything. Life is a gift, dream recklessly.
I thought to myself one night, what if I could create a VR experience that allows people to experience immersive life situations without actually having to go through it, would that alleviate suffering? Maybe.
But then I thought, is that not what life is? A giant immersive experience teaching us how to learn from our suffering? In which case, is the BIGGEST lie we tell ourselves that we have anything to fear in the first place? Maybe I’ve been thinking about life all wrong then. Life isn’t something to get through, to endure, maybe it’s something to be played. Play more, find more playmates. Play big, fall hard, take chances, believe in a better tomorrow.
AND IF THE ANSWER ISN’T RIGHT IN FRONT OF YOU, GO CREATE IT.
*all painted artwork by JoAnna Stephens