I am telling my story of a life altering diagnosis, brain surgery and the healing that came from facing my truth.
It is a message of resilience, bravery, and healing that I hope will touch your heart and open it wide for what’s inside on the road to evolving yourself and your relationships for good.
I burst into tears when I walked in and saw their faces. We hadn’t been together in so long, this was a pandemic outside get together and had I ever missed this touch, this connection, this together-ness.
I had just come from my first neurologist’s appointment.
Dr. Steeves welcomed me into his office, he sat me down in the big old leather-bound chairs he had and got me to pull down my mask.
He took a good long look. His brow was furrowing as he put a pen up beside my left lip and made a few notes.
I was excited to get support for what had been an uncomfortable and at times challenging twitch in the left side of my face.
He had an interesting bedside manner. “Your condition is advanced” he said. “It’s already down into your mouth, you are young for this.”
OK I thought, that doesn’t sound great, but I remained optimistic.
He took a deep breath and said, “Josie, your face is going to change, you will lose the ability to smile, and the dis-figuration will only get worse with time. People might not notice now but they will soon”.
I could feel myself sucking in. Like all the air inside my body was evaporating.
I mean I had looked online; I knew that this could get bad, and I was scared but I kind of thought I had a longer runway.
I was trying my hardest to be strong, stay cool, you’re a spiritual person, you are not your body, you can manage this.
But this, his face, the seriousness of his tone, I mean I just started to crack.
“You should prepare people for this so it’s less awkward” he said. “There are support groups you can join, but honestly you may want to consider brain surgery. You may or may not be a candidate, but it’s worth a try.” He told me.
I started to cry. Panicked asking him, “what do you mean?” Thinking, OK, this isn’t good, looking for sympathy or something to hold onto.
He looked at me, I’ll never forget his words: “Josie, most people who come into my office are dead in a year. You are going to live; you’ll just have a different face.
My face? Different? I thought.
He then, brought me into the bed where he began injecting the toxin in my eyelids.
Botox – who knew?
I had never had it before and honestly before this stark message from Dr. Steeves thought ooh maybe my crows’ lines will fade. They didn’t.
And now I was praying it could save my smile. What I didn’t know then, was that I was praying it could save my life.
At the backyard party my girlfriends looked at me with concern. “What is it, Joe?” Putting a hand on my back, tilting their heads to onside as I cried.
The funny thing? All I could noticed was how I could read their concern by their facial expressions. Something that I would lose the ability to do soon.
My face would change. Brain surgery. Can this be happening to me? Is this real? Am I living in a dream.
That day was September 28th, 2020, ironically my 1-year wedding anniversary. To say things had started out on a strange foot is an understatement.
I had told myself on that day that I was willing to do surgery, that if it could cure me and I could live my life normally as I had before it would be worth it.
It was a soft yes. I really had no clue what brain surgery entailed. But I was hanging on to the hope that this nightmare could be over.
I want to place a full stop here. This was not about vanity. I was losing my ability to communicate authentically. This condition made me not feel like myself. I was drowning in a sea of self-doubt and confusion. Not to mention as I was progressing the twitch, pulse, click, vibration was almost constant, even in my sleep. I would be woken up in spasm, I would fall asleep to the tick-tick-tick in my inner ear, the twitch-twitch-twitch in my eye, mouth, and neck.
AND it was about vanity, all my life I had been the one with a beautiful smile and now this genetic lottery was working against me.
I had found a way to keep my face super still. Mediation and Yoga for 20 years can arm you with a superpower of proprioception. It was a mask I could wear, only it wasn’t fool proof. Spasms still snuck in regularly, betraying me every time.
When I was speaking and doing anything with others, I was holding my face as still as I could, or turning my head so my good side was in their line of sight. Let’s be honest I am naturally very expressive, and this new stone face was just that – cold and foreign to me.
Even anytime I posted which was few and far between it took 30 takes to get one shot without a spasm. I didn’t NOT WANT TO BE SEEN.
I went UNDERGROUND.
Covid and masks were a god send for me because I could wear sunglasses and my mask and be under the radar, no one could see what was happening underneath. But my family and those closest to me felt the withdrawal, the going down, the quietness, the dimmed down version of me.
Hemifacial spasm is a neurological disorder with physical and psychological impacts.
And I was a spiritual teacher, a life coach, I had wisdom, a message to share, I was the one who helped others out of the blind spots. And now I was cracking. I was questioning reality.
Things got weird. I believe you can heal yourself. I thought I should be able to do this. Holding the belief that you are not your thoughts, and you know Joe dispenza the shit out of this disorder. FUCK.
“Come on Josie, you can heal yourself. You can do this; you must” was a regular thought.
And the flip side: “You are a failure if you don’t. You are phony, you are a fraud, you brought this on yourself and worst of all, you are a stranger to yourself.”
I couldn’t breathe.
I remember in the early stages I would have breaks in the spasms where a few weeks would pass, and I would only have a few episodes a day. Hardly noticeable. See it’s better, I would tell myself and share the hope with my mom fingers crossed this would just disappear from our lives.
And I meditated hard. I spent 30 minutes morning and night in my bed for six months drawing down golden healing light and bringing in Arch angels to repair my nerves. I was Eating healthy, taking omegas, doing my yoga practice, and reducing my stress, Stress?
Ah the stress of not being able to be myself and show up the way I wanted to. It was paralyzing. My whole life I had zinged to the buzz of my own authentic song, and her tune was turning ugly.
On top of this I had a badly broken ankle in 2021, and my brand-new marriage was really struggling. We were miles apart from each other and facing things that belong in a future story, it was adding to the weight of it all.
I was in deep pain throughout my whole body. The depression was taking hold.
I remember on the good days singing in the mirror, I had this song that I would sing:
You are having a magical experience, you are healing, you are having a miracle experience of healing.
I would sing to myself and wave my arms in the air and dance my healing song and it kind of worked until it didn’t.
It got worse. The covid vaccines I took both gave me bell’s palsy which aggravated the condition even more and prevented me from getting Botox as my nerve was too delicate, it was too risky, so I was adrift at sea with only me and my rapidly changing face that was betraying me at every look.
I was getting so desperate.
I have never felt such despair.
I didn’t want to be here.
This wasn’t my story.
And I should be bigger than this, I should be able to get through this and rise above.
But I couldn’t get out from underneath it.
And I was hiding this dirty little secret. I couldn’t see my life like this, and I didn’t want to.
Fast forward to January 2023, my Husband and I had decided to try on a new environment and live in California for two months over the winter. Brilliant.
This was our reset. If you have ever been to Ojai California, you’ll know about the pink moment.
This is an extraordinary moment when the sun hits the horizon, and when all elements of cloud formation are just right a section of the Toppa Toppa mountain range turns pink. Like eclectic pink and this ridge was right behind the home we were renting.
Refuge in nature and a new environment. This would be the medicine we needed we thought, and it surely was.
What we didn’t anticipate was that the day I met Dr. Cusimano of Saint Michaels hospital in December of 2022 and signed the forms to elect for Micro vascular decompression surgery, would be the medicine we truly needed and that it was coming much sooner than any of us expected.
Before we jump to this miraculous edge, part of the whole story that is beyond the “Cole's notes version” that needs an injection here is that outside of my condition HFS and what was going on, I had been managing a medical emergency fear, it’s called medical anxiety.
I had been dealt a lot of adversity over the past few years, my season of setback. Along with my HFS diagnosis I had an onset of optical migraines taking me down for days at a time, the broken ankle, and fall out from that with my right knee unable to ride a bike or walk very far AND the big real and pervasive fear of getting a blood clot from the broken ankle.
Add a pandemic and nearly losing my father to a major motorcycle accident, my mother to sepsis and being the first responder to two lifesaving events and well, welcome fear of medical emergencies.
Nick and I had no idea my surgery would be so soon; we had been told a year and half or longer. During our reset in California, we were trying to come back to one another, I was trying to be OK with not being OK and move on with being an authentic creator in my life and be seen.
There was more than one healing experience during our stay in Ojai, this one happened between Nick and I and it is one I can’t leave out as it was the first rope thrown down to me.
Something I could hold onto and pull myself up with.
This moment came when sitting in the grocery store parking lot, the pink moment alive in front of me, Nick inside grabbing a quick stash of goods for dinner. I kept thinking I’m not OK. This went on in my head a feeling of not being OK. OF great fear and something I hadn’t shared with anyone in any real way.
Nick got back in the car, I was driving, and he looked at me and could tell something was off.
“What’s up honey?”, he said.
So, when Nick looked over at me and said, “What’s up honey?” it was a loaded question. He had seen me debate going to the emergency room many times, the outcome of medical anxiety. You literally think you’re going to die of you don’t take action and see a Doctor ASAP.
This had been a burden on our family and our relationship. I didn’t want to bring anything more, so I kept the big little secret inside.
Nick managed his own fears by putting them at an arm’s length. Picture an ostrich with a tornado approaching and popping its head under the soil. That was Nick when it came to me getting brain surgery and dealing with this condition.
He tried and was kind most of the time, but we didn’t get everything right and there was hurt and resentment and fatigue with all our stuff.
I looked at him as the anxiety was swelling in my chest and spoke, “I don’t know if I can do it”.
“Do what” he said?
I just don’t know if I can do this.
“What do you mean “? he said.
It was a short drive back to our place.
As I pulled into the driveway, I just started crying, like full body crying.
“You don’t have to do the surgery Joe, we can get through this, I know you’re scarred.”
It was the first time the ostrich looked up.
“I am afraid”, I said.
Nick looked at me and said, “of course you are afraid”? It’s brain surgery?
I said, “No, I am not afraid of the surgery” I was but there was a bigger fear.
What are you afraid of? He asked again.
“It not working.”
“What happens if it doesn’t work?” he asked.
Threw my tears I told him, “I don’t know if I want to live.”
There the truth was out.
I wasn’t carrying it alone and I had a real person to hold it up too.
To my surprise, He said, “OK, we can deal with that.”
Those words were like a symphony to my ears. He accepted what I needed which was to be held were I was, with the truth.
He didn’t judge me.
He didn’t freak out and make me wrong or sick for what I was I feeling.
It was one of the deepest most honest and intimate times we’ve ever shared.
He held me as I cried my tears of truth and of finally feeling heard in the knowing of what was going on for me.
We finally got inside.
I couldn’t hold back the transformation that was happening inside me, like a lock had been broken open and instead of cracking I was coming home to myself.
We embraced in the living room, and the man I held there was 8 years younger. It was the Nick I had met early on in our dating. He had transmuted in that moment to all that I needed, he wasn’t hiding himself, he was available, he was there for me and saying all the words I had longed to hear. I wasn’t the problem anymore. He was holding me, there for me, and accepting of my truth.
I knew then that no matter what happened I’d be OK. We’d be OK.
Because trust me if you are waiting on coming back to yourself, back to your love, wait no more. Be brave, pull your mask down and be seen. It changes everything.
Have the conversation, say the words, read the book, have the surgery, or don’t but give yourself the freedom to know either way by choosing your road and not walking it alone.
Let your feet feel the ground beneath you and feel your heart lift towards what really matters. Be awake. Because you never know when life with shut out the lights.
My light got turned back on April 5th, 2023, when Dr. Cusimano and his team of 10 doctors spent 5 and a half hours in a microscopic brain surgery to move my artery and repair my nerve.
Coming out of surgery I had to go in for an MRI to see how things were landing and of course to check for brain bleeding.
The ICU nurse came and woke me, “oh this is unusual” she said. “You are going in for your MRI now, this is good luck someone must be looking out for you.”
It was 2am not a time they usually do this kind of thing.
I was catheterized and quite out of it, not walking or moving on my own so was rolled down to the MRI room.
As the two technicians moved me onto the bed and the remote control motored me into the tube, I started to hear a song. A chant I remembered but hadn’t sung in its entirety in years.
Om Tryambakam Yajamahe
Mrityor Mukshiya Maamritat
The English translation goes something like this:
the three-eyed one
We adore, honor and worship.
A fullness of life.
One who nourishes and strengthens health and wealth.
The one who nourishes others and ensures their fullness.
like the cucumber or melon or a big peach.
Free, liberate from death.
All the verses not just this one started to flood through me like a radio wave tuned to my body and my location broadcasting to the world. It was miraculous.
From that moment on during my hospital stay I couldn’t turn the radio off. It was a constant flood of Sanskrit chants I had sang during my two stays at Ashrams and the times I had spent in sangha with my yoga community.
What I didn’t know until the next day was that they had discovered a blood clot in my brain that evening. WHAT? You mean I got what was most afraid of getting?
The next day with doctors around my bed I learned that a vein had been cut during my surgery that resulted in a lifesaving event and thus the blood clot formed from cauterizing my vein to stop the bleed.
Pull up your front row seat to my miraculous EDGE, I got my blood clot and in my brain.
But maybe somehow, I had unconsciously known this was coming. Or perhaps my fear of a blood clot tuned my wave lengths and I caused this with my worry. I’ll never now.
I was in the hospital for a week getting on the right amount of blood thinners, radio blaring, and so grateful. So unbelievably grateful as most of my twitching had ceased.
I was sent home with a high does inject-able blood thinner I was on for 90 days, ironically again I was at a 5000x higher risk of bleeding to death so stay off the bike and hold the rail down the stairs. I was living with my brain blood clot. It was almost laughable.
What I know now is that I am a warrior. I had faced my greatest fears, I shared my truth and was accepted, I had the surgery, I got the blood clot, and I came out the other side.
The universe gave me what I was most afraid of to show me I could handle it and still be OK. My Miraculous EDGE. So close to death and now so alive.
I felt like when I went into that surgery room, Dr. Cusimano and his team used their blades, their own miraculous edge to cut me open and save my life.
The one I had envisioned for myself all along, with my authenticity soaring to great heights and my beautiful smile touching the hearts and souls of my circle.
Life will simultaneously put you up to your greatest challenge and your greatest learning.
I saved my life by being vulnerable and sharing my truth.
Nicks acceptance saved my life.
The surgeons saved my life.
The mantra saved my life.
It’s a dream. It’s my life.
And I am here to live it, healed, healthy and grateful beyond any measure. With more tools and insights on how to spot the learning in my life, and interestingly in yours too.
I know this so much more powerfully now. It’s undeniable my gift.
Now having been underground, way down, I know what is possible to overcome.
The growth that’s possible when we wake up to the classroom that is our life and allow ourselves to be seen, when we show up in our relationships and feel heard. When we’re brave enough to have the hard conversations and we put in the effort to love ourselves just as we are: life changes, you, and everything around you evolve for good.
I am so thankful to be here with my two feet firmly planted on the earth and in your inbox. ;)
May you always find your way back home to yourself.
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If you or someone you know is struggling with suicide ideation, please talk to someone, or call this help line: 1.833.456.4566