Sometimes, there is NO choice. Sometimes, the universe asserts its power. The superwoman. Expired.
That’s what happened to me on a perfect morning almost 3 years ago while kayaking in Ventura Harbor. I was on top of the world – active, healthy, happy – telling my friend just how amazing my life had been and why I’d have no regrets nor a bucket list if I were to die then and there. The universe clearly thought I was daring it to test me: ten minutes later, my neck felt stiff, my breath became shallow and my head was pounding. Little did I know… I had a brain aneurysm that ruptured just as I was giving praise to Life.
By the time I got to the first hospital, I couldn’t move my left arm and fingers. The headache was all consuming and I was overpowered by nausea. I was cold, shaking and annoyed that there weren’t enough blankets to keep me warm. Speaking became difficult as every part of me went into slow-motion. The world was becoming distant. I heard voices and saw figures, but my brain was unable to make sense of what was going on. I wanted to close my eyes. Someone held a phone to my ear:
How do you tell your son that it may be the last call as your life is draining? I needed him to know that I loved him and his brother, and all was OK no matter what happened: that I wasn’t scared. I have no recollection of finishing the call nor being put onto an ambulance and transported to a Stroke and Neurovascular Center in Santa Barbara. I know now that the swift action by the two hospitals and the ambulance crew saved my life: every minute and every mile can mean losing a part of the brain when an aneurysm ruptures. But then, none of that entered my consciousness – I simply went along for the ride.
After several hours of brain surgery, I woke up in life support only to fall back to sleep for days. Days and nights blended in the ICU. At some point, I had no more energy to live, but as I gave up, I somehow “came back”. Slowly, my body started to cooperate with the treatment, and when I finally got out of the hospital, healing became priority #1.
Three months after the rupture, I was keeping a journal to cope with the physical and emotional roller coaster. Wondering how I was going to get to some place where things would become “normal” again. Three years later… I am finally at peace with the “new me”.
Here are my five mega-learnings:
1. It’s okay to not be in control.
So many of our days are spent trying to control what happens to and around us. Yet, as I lay in the hospital fading away, it never occurred to me to create a Gant chart of everything that had to happen to stop the brain bleed; nor question the decisions that were being made for me. It was immediate and complete surrender and trust that others did their job. After surgery, I had a full-time ICU nurse assigned to me: she was amazing. No one had access to me without her permission and she counted the minutes (exactly 3) that anyone could speak to me before they had to go.
I had to let go of control so that others could do what they do best… and save my life.
2. Acceptance is the gatekeeper to peace.
Up to 50% of patients with subarachnoid hemorrhage die on their way to the hospital, or in the days following the surgery (I didn’t know those statistics then). My big lesson in acceptance was realizing that I didn’t have it in me to fight anymore… I was ready to die. That simple acknowledgment brought instant peace and led me to an amazing place full of light and love. I now call it my hallucination, because I cannot explain it, but I still carry that feeling of peace and light close to my heart.
We resist death because it ends everything we know. But it’s not the end… through acceptance, we enter a new stage of life, even in the face of death.
3. Courage is choosing when to face the world again.
Severe injury affects the very essence of who we are. Our self-image, carefully constructed over the years, is wiped out when our physical and mental capabilities get altered. Many survivors look “normal” on the outside, but struggle with invisible injuries such as mine: short-term memory loss, constant ringing in the ears, severe headaches, sudden spells of fatigue and lightheadedness… Our disabilities and the stigma associated with brain injury, all affect how we see ourselves and how others receive us. We feel vulnerable. It takes courage to face the world when feeling less than normal, and it doesn’t have to happen right away. For me, it means being patient and gentle with myself first. I wasn’t avoiding the world, but I was weary of its effect on my broken body and spirit. Unfortunately for many survivors, the emotional and physical support systems are lacking at work and at home, which makes it even more difficult to “fit in”.
Courage in recovery meant listening and honoring my body so that my spirit could rise again.
4. Gratitude without grieving the loss isn’t real.
“You are so lucky.” I hear it all the time. I AM grateful for being alive, for having the support and love of so many people, for being able to speak up… But ironically, the things I am grateful for have also been the source of my guilt during recovery. Is my struggle insignificant compared to that of others? Gratitude without acknowledging what has been lost isn’t real. In order to appreciate what I have, and rediscover joy in my life, I had to face the losses. Grieving the “old me” that was lost; the relationships that shifted; the dreams that faded. For me, this was the path to gratitude. I am truly thankful for what and who I am today, but this includes what I’ve lost.
In order to appreciate what I have, and rediscover joy, I had to face the loss.
5. Being Alive means being here; NOW. I was (and still am) an active person, but I had to learn to deal with sudden fatigue that takes over my entire body and mind. I hardly took breaks before; now I can’t live without them. Sitting alone in silence, I replenish my energy and notice my emotions and surroundings in acute detail. A bumble bee crawling into a flower the shape of a shadow… raindrops on the window shaped like the tears falling from the corner of my eye. I become fully immersed inside a tango song… simply waiting for the next beat, feeling each moment and each movement as it comes. Slowing down, allowing the music (and the leader) to invite me to the next move. There are days when I can’t see the computer screen, my head hurts and eyes blur and all I want to do is hide. I did. For months. And I cried… sometimes I still do. Being alive means being able to feel all of it: the good and the bad, and not be ashamed of feeling bad.
The dark side of me makes me appreciate the vibrant and light part of me more. I love all of me.
Beyond the mega-learnings, the states of mind and emotions that follow here, have contributed greatly to who I am today. These are excerpts from my journal, written in the first 6 months of my recovery. They are the “reality” that makes being a survivor hard. An emotional and physical roller-coaster of daily adjustments. They are the reason why the lesson in acceptance and self-love is a work in progress. Maybe forever…
Somewhere inside these fragmented thoughts are messages that matter… Lessons that I am still trying to sort out for myself. Maybe there is a common experience to be found by telling my story and hearing the story of others – through which we connect not just as survivors but as human beings.
6. Worn-Out. Lack of sleep (terrible insomnia), but it’s not just that. It’s a total lack of rest and healing inside my body. Trying to be “on” when too tired, not giving myself permission to be “less” than I was before my injury.
7. Misunderstood. Indirectly: not because people say it but because I feel it from them – they WANT me to be “well” now. I need to “act as if I am better now”, because that’s what they want to see… Need to smile a little more, be a little more upbeat, say I’m doing ok: “very well, thank you!” But inside, I’m not well at all.
8. Discouraged. Wondering when it ends. When I don’t have to worry about the humming in my head, the ringing in the ears – or suddenly being overtaken by this great fatigue – out of nowhere. When will I have the stamina to take care of things the way I used?
9. Isolation. Feeling so alone, even when I’m with people. Maybe especially then. I probably make it worse by pulling away from friends and family. I tire out. It’s hard to explain how noise, conversation, and just “being around” exhausts me.
10. Pushing too hard. At work, my team is not yet over the shock of what happened. They kept the company going, brilliantly so, even when it was a scary time for them all. I try to reassure them that there won’t be another time without a contingency plan. What if I had died? Would the company have survived? I push myself too hard to show them that I’m back. Making a plan that doesn’t depend on me. I went back to working part-time too soon: pretending that I was stronger than I really was. The Super Woman. I didn’t know what to expect of the new me but mostly I didn’t want to accept the limitations. I wanted to cry in the first few meetings and tell everyone how amazing they were. I wanted to skip a few steps from joy: I was there – I was alive. I soon became emotional and exhausted.
11. Ugly. Looking in the mirror. The face in the mirror has lost its brightness. The body attached to the face, is worn… My hair hasn’t grown back yet where they cut it off. One of my eyes is smaller than the other today – the headache. I look like a punk on heavy drugs! Am I supposed to stare at this mirror until I can love me again? That’s harsh. I could just hide. How do you hold your head high when people stare at you. What are they thinking? Are they pitying me or judging me? When I meet their eyes, they turn away. How do you remember that this half-punk, worn-out, shadowy look was hard-earned? That it took everything in me to just get here? How do you put yourself out there and believe in your own beauty regardless of reactions?
12. Self-Doubt and Distrust. They go hand-in-hand. The more out-of-touch with myself I was, the less I trusted others. Even the ones with kind words which I dismissed as lies to make me feel better.
13. I am scared. The new me is not the image of the strong woman I’ve always been. The neurosurgeon tells me to give it some time. But these things aren’t getting better. I forget things. A lot. (short term memory loss). My house is a sticky haven of reminders. It’s harder to stay focused. Especially with multiple inputs coming at me all at once. I used to be a great compartmentalizer and multi-tasker (although technically multi-tasking is just an illusion: even a healthy brain can’t process that way). Some tasks take a lot longer now: writing, reading and reviewing work outputs. On bad days, it’s impossible to read. I know the words, but I can’t get to the “making sense” part. Directions, technology, rapid-fire instructions – not possible to follow. Total blur most of the time even when I try hard to concentrate. Especially if under time pressure. Even simple things like using conference call functions isn’t always “simple”. My head is “noisy” – always. The ringing in the ears and humming never stops. My hearing is ok, not linked to that – based on other accounts, this is common after brain surgery. After almost 3 years, now, I know it’s not going away, so I’ve learned to just let it be. Meditation music at night helps distract my mind from it so I can fall asleep. I don’t sleep full nights anymore.
14. The worst hit. I have sleep apnea. I took it personally when my boyfriend pointed it out: I’m not just tired and ugly but I snore! Totally not attractive! I wanted to run away, to find that place where no one was going to judge me. Where I could just be in peace.
15. Anger. I got angry at myself because I should know better! I teach resilience! The only person I am running away from is me! It took a long time for me to admit just how vulnerable I had become. It was hard to unravel the messy knot that I had managed to turn myself into… The old superwoman ego was messing with my healing – and the brain wasn’t having any of it. Good for the brain!
16. Grounding myself. I couldn’t get the images from my hospital hallucinations out of my mind. One day, passing an art studio, I stopped. I have been painting ever since. First “masterpiece”: The Storm Inside My Brain – an abstract. Second painting: the Girl from my hallucination. Her image is me at 7 years old. She was inside that place of light and love, as I was dying. I can’t get the painting right. Maybe by the time I do… it will be my last painting. Until then: keeping this beautiful life close to my heart. It is amazing to get a 2nd chance at it.
17. Hope and Joy. I always danced, then lost my balance. And finally braved to dance again. Tango brought me back to my physical self and taught me that while limitations matter, they don’t have to keep us from living. This is my life and it’s worth living. This is where I belong. But I want to reach out to other survivors and hear their story. I want them to know that they are heard and seen and appreciated for who they are. As they are. Because together we belong.
What I Know to Be True…
In Each of Us, there is a Harbor of Life. It is wherever we build it. It’s that place where we feel complete. The place where feelings, thoughts, memories, and dreams can be discovered and shared without judgment. For me, I find it in the physical place where my life changed forever. I go to my Harbor of Life, for hope and inspiration. I go there to remember the day I “expired” in my kayak, to honor the countless numbers of people who didn’t make it. I go there to celebrate the old and the new me: imperfect yet beautiful, broken yet whole; brave yet vulnerable. It’s my portal to the universe – the place where real connections are made and love still rules over all else. Where a simple smile becomes an invitation to dance the song that’s inside me.