Out of the Fog
I’m not a fan of the stories where people talk about how a personal illness or injury has transformed their lives.
My lack of empathy is probably rooted in the fact that injuries have defined my life. Since the age of 16, I’ve had serious issues with my bones. Basically, I’ve had degenerative arthritis in every major weight bearing joint. Combine that with lax ligaments (also known as hyper-mobility) and you have all sorts of really painful bone and joint concerns. Oh, and I was a professional dancer, so, you know, my body hurt 24/7.
What was so important about these people who suffered and then found the true meaning of their lives? Come on. It sucks. You deal with it. You keep moving forward. If you stop, you will probably freeze up and die.
I was stoic about the pain in my body. It was part of who I was. But just a part. I was also focused on being part of the artistic and intellectual elite. My circle of peers was narrowing to the top of various pyramids, and I was determined to stay close to the pinnacle.
Over the years, as I retired from dancing and moved into business, I slowly became aware of the value of friendships, strong morals, and empathy. I learned the phrase, “I’m so sorry you are going through that.” My friend Cindy taught me that phrase in 1996. Over time, it actually began to mean much more than, “I’m listening, but please get on with it.”
Queue Soundtrack - Joni Mitchell, Big Yellow Taxi,
“Don't it always seem to go, that you don't know what you've got till it's gone.”
I must have heard that song a zillion times… living in NYC it seemed like a theme song. All the times I heard that song, I assumed I understood what I had and what I didn’t have. I thought I had a very solid catalog of my gifts.
But I missed one gift. A biggie. My brain.
I never thought about my brain - except perhaps that I killed too many brain cells carousing the night before. The only other times I thought about my brain were speculating about anyone’s extra-sensory perception skills or finally understanding how my brain processed information. People thought I was super smart, but actually, I have off the charts pattern recognition skills… which makes me look smart, but you know, not actually smart. I have some really smart friends and I’m definitely not at their level.
That was the end of my attention to my brain.
Flash forward to 2016. Still on the move, but thankfully, a little more grateful for the many blessings surrounding me. For the first time ever, I felt like the universe was lined up for me. I had an amazing life partner, incredible friends, one of the best ever work teams, and a rich creative life. As far as I was concerned, basically I had everything I ever hoped for and more. I felt pretty damn lucky.
August 6, 2016 I was racing through LAX. I had been in Santa Fe, NM and was coming home to Los Angeles. I was on cloud nine. I just performed on stage for the first time in ages after a “Write your Life” workshop with Ann Randolph and Tanya Rubenstein. I was coming home to the love of my life. I literally bounded through the airport, dodging suitcases, small children, tourists, and skycaps. This was a double delight: I was coming from and going to happy places in my life.
It’s funny, the very moment I was bounding through LAX, I recognized this extraordinary moment.
I had everything I ever wanted.
And then, it changed when I dove into the taxi cabthat would take me home.
People were picking me off the pavement in the taxi line. “Are you OK?” “Should we call an ambulance?” “She isn’t bleeding.” “Ma’am, where are you going?” I was in the back seat of the taxi cab heading home.
Apparently, I smacked my forehead on the door rail of the taxi cab and knocked myself out. Later I would discover that I also cracked the back of my head on the sidewalk when I landed from the forehead whack.
I’ll spare you the very long chronology of events. But I will tell you this part.
My brain no longer worked the way it had before. For the first time in my life, I was actually aware of the soft squishy mass between my ears, inside my skull. There was no way to not be aware because it yelled at me almost every moment of every day for two plus years.
It was terrifying. And of course, I made my terror worse by watching two movies, “Concussion” with Will Smith and “Still Alice” with Julianne Moore. The unbridled emotional swings like the football players and the complete absence of time passing like Alice unnerved me. It occurred to me (on days when I could process information) that perhaps, I had more in common with football players and Alzheimer’s patients than my colleagues.
Anyone who has had chemotherapy, concussion, stroke, or early phases of Alzheimer’s/Dementia knows what it is like to enter into deep brain fog. One day you can see your surroundings just fine. The next day, you cannot see a thing. And worse, you cannot predict what type of day you are going to have. At least not until you understand the limits of your invisible wall.
I began a new life, one filled with memory gaps, migraine headaches, brain fog, vertigo, numb tongue and lips, a sluggish gate, and constant confusion. I tried to go back to work. That was a disaster. A new world of paperwork emerged: short term leave of absence insurance, short term disability insurance, long term leave of absence insurance, long term disability insurance, health insurance claims, on-going claims for every kind of coverage.
What happened to me? Where was I?
Was Carrie still in there?
Like so many people who are faced with the unknown and fear, I withdrew my public persona. No LinkedIn, no FaceBook, no speaking engagements, nope nada. I didn’t want anyone to know that I was diminished and impaired. Would I ever work again? Who would hire me if they found out that I was not my former self - brilliance, flaws, and all?
About 14 months after the accident, I ended up getting neurofeedback. I mean, what the heck, try anything and everything, right? It had a nice calming effect on my panic stricken psyche. Over time, I was able to focus better and sustain a good day. A year later, a little more than two years after the accident, a mix of a new medication (Aimovig) and Alpha Theta neurofeedback broke through the brain fog.
I created a new daily pattern. 30-minutes of exercise, daily mindfulness, planned times to interact with people, planned times to focus on paper work, planned times for creativity. I would set stretch goals for myself. If I was exhausted the next day, then I would take note - that stretch goal was too much.
I slowly realized the great need to balance my greed for "Old Carrie" and gratitude for simply being able to distinguish healthy vs dangerous.
Which brings my story to the present time. It has been three years since I knocked myself out on a big yellow taxi.
And I am back.
In February, I performed with two other storytellers at a small theater in Venice, CA. It was thrilling… just as thrilling as the performance in Santa Fe in 2016.
I also co-founded a business to help people better understand how their brain works. You know, get to know yourself before you have a dire need. It’s in the works and evolving.
And I’ve learned a whole new level of compassion - beyond my former-self’s comprehension. When you rely on others, suddenly, you see people in need with new vision.
I’m ready to work again. I’m ready to take on the world.
But I’m going to go slowbecause my trusted network of friends and professionals all agree: easing myself back into the corporate world is the way to go, not dive in.
And now, I am faced with the dilemma of my life. What do I tell people when they look at my resume and ask, “Why the break ?”
I could state the obvious with the patent answer, “I had a medical issue, but it’s resolved and I’m good to go.” Conscientious interviewers would know that they could not discuss it.
But I don’t want to say that. I want to be a voice for people who have suffered a serious bout with cognitive function and have worked their way through the fog into the sunlight.
I want everyone to know.
I had a traumatic brain injury, it was scarier than hell, but I’m amazingly on the other side of it. In my little world, this is a miracle. Many people don’t come back.
I want employers to know, if you have a former brain fog candidate who is completely qualified and courageous enough to actually interview with you, you have an opportunity to have a superstar on your team.
I’ve met many people who have come out the other side. They are gentle warriors - constantly mindful of their surroundings and vigilant not to waste a single moment because time is utterly precious.
And so, on this three-year anniversary of diving into a taxi, I wish to honor not only my true Love and circle of supportive friends and therapists, but also the countless others who have gone through this same journey.
This invisible injury, brain trauma, is real.