Tarja's Story

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.