When It Comes to Defeating the Enemy, Stroke, I Wrote the Book

A surgeon stepped into the waiting room, where 16 of your family members were quietly pacing and praying. "She is in critical condition. She appears to have had a seizure and she had heart failure. Her hemorrhage is massive. We are doing life-saving measures to evacuate the blood. If she makes it she'll most likely need reparative surgery once she has been stabilized."

“What do you mean 'if she makes it'? She is healthy, young, and strong." Your husband, Jim said incredulously.

“What I am saying is that she may not survive the operation. This procedure has a high mortality rate” the surgeon said solemnly.

During the surgery, I died on the operating table. My heart stopped beating. My lungs stopped breathing. My brain stopped functioning.

During the flat-lined period, I was climbing a ladder that had no beginning nor end, top and bottom faded into the clouds.  I thought, "Wow why do I have to climb, shouldn't I have the ability to float?"

Instinctively, I knew I had a choice.

Should I stay or Should I go now.

I chose to stay.

"Can I return as Beyonce?"

Someone is telling you to wake up. They sound dangerously, oddly happy; and it is obvious something has happened.

And you are not Beyonce.

This July 17 marks the 20th anniversary of the war on my body, where I had to battle against a massive hemorrhagic stroke.  It ravaged my body and killed a large portion of my brain. An MRI reveals this reality. The right side of my brain is over 60 % dead, the size of my fist. The large black spot on the scan is dead brain tissue. There's also a deep hole where the surgeons evacuated the blood during brain surgery. There was a time when speaking of something undesirable I would say, "I need that like a hole in the head! Now I add, “Wait, I already have a hole in my head.”

My brain injury may have claimed my limbs, but it did not capture my spirit. I fought off this enemy that rendered me disabled and nearly killed me, with humor, positive attitude, hope and faith. Stroke may have had its way with me, but it could not conquer the essence of me.

War is ugly and stroke recovery is not pretty. Fighting a war requires a unified front. I rallied my troops--my parents, brothers, friends, husband, and son--to help me through the darkest times of my battle. Initially, I felt that time was on my opponent's side, it ticked so slowly. Brain Injury recovery is measured in minutia. As time passed, however, it changed sides to become my ally. It was now like a time-release medication. As I looked back to the beginning of the assault, I realized that those small seemingly minor skirmishes were taking a toll on the enemy, the tide had turned. I had reclaimed significant territory since the battle lines were drawn. My horizon became brighter with each passing day.

Yes, twenty years ago, I escaped the Grim Reaper. Every year since that fateful day, I have marked July 17 as a “Homage to my Hemorrhage,” celebrating the gift of more time here on earth.  I had been thinking of my 20-year anniversary as marking a milestone, but upon reflection, I have come to realize that every day represents a milestone—another opportunity to make a positive difference in this world.

Although the course of my life as I had originally envisioned veered off course, I am brimming with gratitude for the incredible opportunities my stroke has given me.  I never felt like a victim of stroke, but always a survivor of life's happenstance.  Although some may cringe when I refer to my stroke as a gift, it has shaped my life in ways that are surprisingly full of wonderful possibilities, including the remarkable people I have met because of my stroke.  These folks have also educated me and left me in awe and inspired by the power of the human spirit.

No one escapes adversity, whether it be physical, emotional, financial, or some other setback. Mine happened to be a paralyzing stroke, but it has given me insight to what is important. My stroke, my educator, has schooled me well, and provided lessons that keep me grounded, fulfilled, and greeting each day with renewed hope. Thanks to my stroke, I've learned:

• Life is about choice. Each choice is predicated on my prior choice.
• Laughter truly is the best medicine for the mind, body and spirit. I must administer steady daily doses. Being able to laugh at myself induces more laughter with others, creating a cacophony of joy and positive connections.
• No one is responsible for my happiness but me. It is an inside job that I must undertake and make a habit. Just by choosing it, though, doesn't make it inevitable, it takes hard work.
•  Say goodbye to embarrassment. No one has the right to judge another. I learned that to feel embarrassed is what I am thinking others are thinking of me. The source is internal not external. It is how I talk to myself.
•  I own my dignity. It is only lost if I give it away. Keep my head held high and my eyes on the prize--my quality of life.
•  There will be obstacles to achieving goals. Overcoming an obstacle may require a detour, but this often exposes me to new revelations.
• The proverbial “light at the end of the tunnel” is visible only if I access the light switch within myself. The damage has already been done, now it’s up to me to deal with the aftermath of the wreckage.

Many folks ask why I would celebrate a date that has left me impaired and in this disabled state? Of course, it still engenders pain and distress at the memory, but it also shows how far I have come from that day when I thought I was going to die. Celebrating allows me to get the upper hand over my stroke (albeit the right hand only—my left hand is still good only for decorating). This is a day for reflecting and rejoicing at the opportunity to have had 20 more years of celebrating birthdays, anniversaries, graduations, weddings, and other special events with family and friends.

Twenty years ago, when we celebrated my son's third birthday, I didn't realize then that would be a memory that would sustain me five days later when I suffered my injury. Parents are proud and emotional at their children's accomplishments. It becomes especially apparent at graduations. I have been blessed to see both his high school and college graduations. I was overwhelmed that I lived to see these accomplishments. I was a blubbering mess--mostly tears of joy, but also tears of reflection. Yes, there have many occasions to celebrate over the past 20 years, as there have been trials of sadness and loss. This is the Yin and Yang of life.

I am not my stroke. Does it define me? In some ways, yes, but it is only layered on an already multifaceted Julia.  I am the victor of my stroke, I conquered the beast. As it attempts to raise its ugly head daily, I am battle ready. This enemy did not defeat me, it only made me stronger, wiser, more grateful, and happier. Yes, happier. I know up-close-and-personal that there are no guarantees in life and that every minute I’m alive is a gift.  

Acquired Brain Injury (ABI) vs Traumatic Brain Injury (TBI)

The Brain Injury Association has debated the definition of Brain Injury with the intent of making the distinction between Traumatic Brain Injury (TBI) and Acquired Brain Injury (ABI). Traumatic Brain Injury results from an external physical force such as might occur in a car accident, sports event, fall, or anything that involves blunt force to the head. Acquired Brain Injury results from an internal event such as a stroke, hemorrhage, brain tumor, infection, poisoning, and so forth. An ABI by definition encompasses TBIs since both injuries occur after birth.

I had a hemorrhagic stroke which would be defined as an ABI. In my experience, I don't see much difference in terms of rehabilitation and recovery regardless of the terminology. Both conditions require an enormous amount of hard work, diligence and perseverance. Brain injury is brain damage, that is, dead brain tissue, and it is always traumatic. Whether acquired, which I believe is a misnomer--it sounds like something sought after or pursued, or traumatic, the injury presents enormous obstacles to overcome.

15 years later...Milestones occur every day!

Fifteen years ago today, I narrowly escaped the Grim Reaper’s scythe. Every year since, I have marked this day as a 'Homage to my Hemorrhage,' celebrating the gift of more time here on earth.  Originally, I thought of this year’s anniversary as a milestone, but in reflection, I realize that every day is a milestone, an extra opportunity to make a positive difference.

Although my life’s path as I had envisioned veered way of course, I am immensely grateful for the incredible opportunities my stoke has given me.  I never felt like a victim of stroke, but rather a survivor of life's happenstance. While some may cringe that I refer to my stroke as a gift, it has shaped my life in ways that are surprisingly full of wonderful possibilities and brought many remarkable people into my life, people who leave me in awe and inspired by the power of the human spirit.

No one completely escapes adversity, be it physical, emotional, or financial. Mine happened to be a paralyzing stroke, but it has given me insight to what is important. My stroke has taught me lessons that keep me grounded, fulfilled, and ready to greet each day with renewed hope. Thanks to my stroke, I've learned:

·         Life is about choice. Each choice is predicated on my prior choice.

·         Laughter truly is the best medicine for the mind, body and spirit. I require daily doses. It starts by laughing at myself, and when my dear friends join in, it creates a cacophony of joy.

·         No one is responsible for my happiness but me. I must choose to be happy. But just because I choose it doesn't make it so; it takes hard work.

·         I must overcome obstacles to accomplish a goal. Obstacles, or roadblocks, cause detours, but I am not discouraged. Detours often lead to new discoveries about myself and what I am capable of.

·         The proverbial 'light at the end of the tunnel' is there only if I find it within myself to foresee a positive outcome.

I am not my stroke. Does it define me? In some ways, perhaps, but it is only one side of the multifaceted person I am.  I am the victor of my stroke; I conquered the beast. Yes, it raises its ugly head daily, but I am battle ready. This enemy did not defeat me, it only made me stronger, wiser, grateful, happier, yes, happier. I know up-close-and-personal that every day I get out of bed is a gift.

Limping for joy!

-xo-julia

Plateau or Summit?

When I was in rehabilitation, “plateau” became a dirty word to me. I know that others undergoing rehabilitation share this sentiment. The word is code for “you’re not going to get any better” or “don’t expect to see any more improvement.” All you do is strive to get back to normal; all they tell you is be happy with what you’ve achieved. The conspiratorial wheels start to spin when the insurance company terminates your therapies because you’ve “plateaued.”

This July marks the tenth anniversary of my stroke and thus the tenth opportunity to pay “homage to my hemorrhage,” as I like to call it. Ten years out, yet my symptoms persist: hemiparesis, left-side neglect, neuropathy, proprioception problems, spasticity. Yes, to experience the condition is to know the term to describe it, though I can think of better ways to expand my vocabulary. So, sure, I still have a lot of deficits, but do I think I’ve plateaued? No way. I’m going roller blade and I’m going to run again. In a recent radio interview, I was asked, “Are you 100 percent now?” I answered, “Are you? I’ll be 100 percent when I get to heaven.”

In my ongoing recovery, I picture myself as any professional - an athlete, an actor, a musician - who strives to achieve by practice, hard work, and determination. Like a tennis player working on her backhand, I am constantly working on my gait or on trying to control my spastic left arm. So it really raises the hair on my neck when I hear a patient described as having plateaued. I was speaking to a brain injury group the other day, where a woman told of her husband who, eight weeks after suffering an aneurysm, was described as having plateaued. Eight weeks. That hardly seems like enough time to come back from the trauma to the brain, let alone to show any signs of what degree of recovery might be expected. How can they be so quick to quit on a person?

The word “plateaued” should be expunged from the medical lexicon. I’m not advocating false hope, just to keep hope alive. Never underestimate the human spirit and the will to get better.

Welcome readers,
This has been some journey for me. I never proclaimed,
"I'm going to write a book someday." It just wasn't part
of my DNA. But in the aftermath of my stroke, dealing with
the medical community and insurance companies, and trying
to rehabilitate myself, I sensed I had a story to tell.

It seemed that my experience was a blueprint for how not
to let the system dictate the direction, pace, and objectives
of recovery. I've learned that what your heart, mind, and
intuition tell you can be as valuable as any medical opinion.
My ordeal has also taught me to listen to and rely on my inner
voice, my soul, because it is my link to God and the angels that
watch over me.

We all have a story to tell on this journey through life.
I invite you to share your story here; perhaps it will help
you and others along the way.

This has been some wild ride, but I rather like that wind-blown
look. Many blessings to you on your journey.
with love, julia