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Archive for the ‘Brainy Ideas’ Category

Chapter 3 – Ghost in the Mirror
“We are not human beings on a spiritual journey.  We are spiritual beings on a human journey.” – Stephen R. Covey

Days and nights transposed themselves and faded one into the other. There was no distinction between dream and reality and only a thin curtain separated unconsciousness from awareness. A figure in a long, blue robe drifted across my field of vision. Were my eyes open? Was I seeing this phantasm or experiencing a fragment of some reverie?

As the fog of sleep lifted, I became acutely aware of the stranger walking silently through the room, seemingly unaware of my presence. Who are you? I arose and followed the figure down the hall and into the bathroom, but as soon as I stepped inside she vanished. Confused and frightened, I pushed aside the shower curtain. I was half expecting to hear the eerie, slashing violin notes from the Psycho shower scene and genuinely fearful of finding a maniac lurking there with a butcher knife.

The tub and shower were vacant. I was alone in the small room. Where did she go? Previously skeptical about all things paranormal, I didn’t relish the possibility that I had seen a ghost; yet there seemed no other logical explanation.

While washing my hands I glanced up and caught my reflection in the mirror. I examined the cold and seemingly lifeless entity whose dull gray-green eyes stared back at me without a hint of recognition. Who are you?

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After my encounter with Death, there was a ghost in my house. I knew she was there because her reflection in my mirror terrified me. Pale and lifeless with dark rings encircling her eyes like the black sky surrounds a full moon this specter was as ghastly as any horror movie leviathan.  The phantom resembled Frankenstein’s monster with staples in her half-bald head and angry black sutures closing a blood-red slash across her throat. Although I didn’t recognize her at first, I eventually came to understand that she was the new me. This fiendish atrocity was the person who had survived a ruptured cerebral aneurysm and was now embarking on a quest to return to the mythical land of Normal.

That ghoul no longer haunts me.  From outward appearances, most people would not take me for a brain-damaged aneurysm survivor. The dent in my forehead and the C-shaped scar just above my hairline are disguised by a stylish twist on the old comb-over camouflage. My thoughtful neurosurgeon strategically placed the incision giving him access to my jugular in a pre-existing wrinkle in my neck, so it really isn’t all that noticeable.

Certainly I am one of the most fortunate patients. I am still able to speak and did not suffer any paralysis resulting from the blood that rushed like a raging river into the space between my skull and my brain.  Functioning at a relatively high level, I continue to work as an author, freelance writer and editor.

My right hand has been known to spontaneously throw a cocktail on the nearest unsuspecting victim without seeking my brain’s prior approval. While that tremor still bothers me sometimes when I am tired or feeling stressed, I have learned not to trust my shaky right. Since my left hand rarely spills a drink, this deficit usually goes unnoticed by others. I have come to accept the fact that no matter how hard I focus and regardless how many exercises I do to improve it, my balance is always going to be a bubble off of level. My occasional inability to speak the correct word in the appropriate context is usually overlooked by everyone but me, although it still serves as a source of amusement to certain family members. I have almost mastered the normalcy game. People who did not know me when the bleed occurred have no idea I nearly died from one of the most devastating and unpredictable of health events: a ruptured cerebral aneurysm.

Somewhere in the world an aneurysm ruptures in somebody’s brain every 18 minutes. Neuroscientists believe that approximately 6% of the U.S. population has undetected cerebral aneurysms. That’s about 18 million people! Every year roughly 30,000 Americans experience subarachnoid hemorrhage (SAH) due to brain aneurysms. Between 10% and 15% of these patients die before reaching a hospital and over 50% will pass away within the first thirty days after the rupture. Of those who survive the first month, about half suffer some form of permanent neurological disability.  One can only imagine how much wore the statistics must be in third world countries where access to modern health care is severely limited.

Women are statistically more prone to having cerebral aneurysms than men. Depending on the source, the estimated ratio varies between 2 and 3.2 to 1. Aneurysms can be present and rupture at any age, but most are detected between the ages of 35 and 60 when they either become symptomatic or burst. Sometimes developing as the result of a blow to the head, aneurysms are frequently congenital, as was my case. These circulatory time bombs tick away, waiting to explode.

Early in my recovery, I was urged by fellow survivors to write and publish my story on an Internet website, but I did not do so. I was tired of telling and retelling the story and hearing how lucky I was to be alive. Aside from that, the act of putting it all into words on even virtual paper seemed far too painful. Staring into the hollow face of Death was not something I was eager to relive.

More than a decade later, I realize that relating my experience might offer hope to others. My book, Normal, might help recovering brain aneurysm survivors to better understand what is happening to them – and that they are not alone in their struggle. Hopefully my story will provide caregivers insight into the experience and help them understand why we survivors behave as we sometimes do.  Perhaps some of the coping mechanisms I have discovered will provide some slight advantage to in individual searching for ways to manage life in the aftermath of brain trauma. Maybe medical professionals reading my book, Normal, will derive a deeper appreciation of the emotional, psychological, and spiritual impact strokes have on their victims. Regardless how astute they may be on the physiology of this condition, even the best doctors cannot fully comprehend what it is like to be the patient unless they have experienced it for themselves. By setting aside my embarrassment, my fears, and my long-standing belief that if I can just act normal I will be normal, I aspire to offer hope and support to people who are facing new obstacles and trying to get their lives back in order.

Embarking on this endeavor was every bit as painful as I anticipated it would be. There is much to be said for leaving difficult times behind and focusing on the future. I’ve become adept at faking normalcy, wearing the illusion like armor that shields me from the insecurities that continue to haunt me. Even so, ignoring the scars does not negate the reality of the wounds.

If Normal brings hope and encouragement to even one person who is fighting against seemingly insurmountable odds, I will have accomplished my mission. If my words increase cerebral aneurysm awareness, encourage research, and promote patient support, I will have met my goal. If this account provides one miniscule step in the direction of early detection and treatment to save even one life, I will be elated.

My message is simple: Never give up the fight.

NORMAL is currently available as an eBook on Amazon (U.S. and U.K.), Barnes & Noble, iBookstore, eBookPie, Kobo, and Copia.

 

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Chapter 1 – Brain Attack

No one can confidently say that he will still be living tomorrow. ~Euripides

A  flaming sword slashed into my left temple. I thought, Wow! Where did that come from? If this pain doesn’t stop, I don’t know if I’ll be able to serve on a jury.  As soon as I had completed the thought there was only blackness – no more thoughts, no feelings, just nothingness. My body jerked and writhed in grand mal seizures caused by blood flowing into the space between my skull and my brain as the result of a ruptured cerebral aneurysm.

Serendipity and synchronicity were at work that morning. The lady sitting next to me was a nurse. She immediately started caring for me and yelled, “Somebody call 9-1-1!”

It wasn’t the first miracle in my life. My congenital aneurysm could have ruptured on any given day. I had twice given birth, but the strain of labor and delivery hadn’t caused it to pop. The jolting car wreck I was in years before left my neck stiff and sore, but didn’t cause my brain to bleed. It was a miracle that I was summoned for jury duty that day because it meant I had to be in downtown St. Charles early in the morning.  Afraid of being late for the court appearance I arrived quite early, so I was sitting on a bench instead of driving my car when the rupture occurred. If I’d been following my usual Monday routine, I would have been driving in traffic on Interstate 70. I might have caused a huge wreck, taking innocent lives in the process. I don’t think it was a coincidence that I was sitting at the courthouse just a few blocks away from St. Joseph’s Hospital when the rupture occurred. An invisible protector was watching over me. If I had to have a brain attack, I was certainly in a fortuitous place to have it.

There is no memory of the ambulance ride. Was it there or in the ER where I was assaulted by bright lights while medical professionals shared information about my condition in staccato bursts of medical-speak?  Most of what I heard I could not grasp. The words “…get her stabilized,” invaded my awareness, prompting me to fight harder, trying to wake up. Then it was back to the blackness. For how long, I don’t know.

Somewhere in that void my brain managed another thought. It may have been a prayer or a bargain with God; I know you did not bless me with a grandbaby just to take my life. I know you want me to stay around to help raise her. My first grandchild had been born mid-June and I wasn’t ready to leave her behind just yet. As soon as the thought processed through my brain, I experienced ultimate bliss. All was right in the world. In that nanosecond of enlightenment I knew that the human spirit survives the death of the physical body and I understood that my wandering soul needed to get back into its earthly habitat. With the force of a downed fighter plane barreling into the earth, my mind, body and spirit reconnected with a startling and violent crash and I returned to the serene void that had become my safe haven.

My next encounter with lucidity was when I awoke and found myself looking up at the drained, terrified face of my husband, Mike. “Jan,” he ventured, his brow wrinkled in worry and his face pale with poorly-masked fear, “this is Dr. Martin. He’s been taking care of you.”

Dr. Martin’s face displayed a mixture of concern, confidence and compassion. It was the demeanor of a man bearing bad news that he was reluctant to deliver. I knew immediately that the situation was dire. He cleared his throat. “We need to talk about what happened to you and where we go from here,” he said. “You’ve had an aneurysm burst in your brain, causing you to have a stroke. We have you stabilized for now, but without further treatment you will die.” His voice cracked as he delivered the last three words.

“What kind of treatment?” I mumbled.

“What I propose is a surgical procedure to clip the aneurysm,” Dr. Martin continued, his professional demeanor softening the harshly clinical nature of his words. “We will remove a small section of your skull and set it aside. Then we will isolate the aneurysm and place a clip at its base to stop the bleeding and seal off the aneurysm from the artery. Over time, the aneurysm will wither. Once the clip is in place, we will replace the skull section and close the incision.”

I recall asking, “How do you put my skull back together?” Although I remember him answering, my brain must have stored that bit of information in a bad sector. I can’t retrieve it.

“I must warn you there is no guarantee that the surgery will be successful.” He paused a moment before adding the grim conclusion. “In fact, there is a possibility you could die during the procedure or that the operation could cause additional damage and result in severe disability.”

“What kind of odds do I have?”

“With the surgery, you have about a 20% chance of making a full recovery.” His calm voice made the number sound quite optimistic.

“And without the surgery?”

“Your condition is very serious,” he began. He paused to clear his throat, and then continued, “There is a very high risk for additional bleeding. Unless we clip the aneurysm you will die. The only question is how soon.”  He lowered his glance making it clear how much he disliked delivering the prognosis.

I searched my husband’s eyes and said with as much enthusiasm as I could muster, “I like 20% a lot better than 0%. I think we have to go for the surgery.” Mike nodded his concurrence, his eyes begging me to fight for my life.

Dr. Martin proved to be another of my miracles. On that particular day, he arrived early at his office in the medical building adjacent to the hospital. That was definitely my good fortune because the man is nothing less than a genius. Serendipity and synchronicity placed him exactly where I needed him to be when I needed him to be there to save my life.

Once I managed to sign the surgical consent forms, Dr. Martin explained to us that the first step would be to take me in for a four-quadrant angiogram.  This procedure involved shooting dye into one section of my brain at a time and doing a CAT scan of each area to get a better look at the bleeding aneurysm and to find out if others like it lay in wait to launch subsequent attacks.

“I can’t have an MRI,” I insisted. “There are titanium plates and screws in my left leg from a double spiral fracture.” Ever the good patient, I regurgitated the instructions my orthopedic surgeon had given nine months prior.

“That won’t be a problem.”  I heard kindness in Dr. Martin’s voice…kindness and calm reassurance. I knew I was in good hands. That dark serenity enveloped me again.

This is as good a place as any to note there is a lot I don’t remember at all. I don’t know with any certainty whether I returned to my haven of bliss because I lost consciousness, because I was receiving medications, or because I was a hairbreadth away from permanently vacating my body. It’s likely I am simply incapable of remembering. Blood in the brain will do that to a person.

*****

NORMAL is currently available in eBook on Amazon, Barnes & Noble, eBookPie, Kobo, and Copia. A paperback edition is in the works. A portion of the proceeds from sale of this book are donated to The Brain Aneurysm Foundation to help fund patient support and research focused on early detection of aneurysms and prevention of ruptures. Every 18 minutes an aneurysm ruptures in somebody’s brain. Each year approximately 30,000 people in the U.S. alone fall victim.

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A few minutes ago I became aware of a Mental Health Awareness blog party. Inspired by http://blogs.psychcentral.com/humor/2012/05/im-blogging-for-mental-health-may-16th-2012/ I decided to focus on the same three points, but from a different perspective.

I’m going to give you my take on helping people recognize the importance of good mental health; overcoming the stigma; and seeking help.

Let’s face it, we all have times when our lives feel less than perfect. When it’s just a rough day here and there, we muddle through and eventually the pendulum swings the other way until life is good again. Speaking from personal experience, I know our emotional reactions to the bad times don’t always retreat without a fight. It’s up to us to recognize that and find a way to do something about it.

We’ve all heard, “Life is too short.” I have a different perspective: Life is too long to be miserable while you’re living it.

About that stigma thing? Boy, do I get that, too! Been there, done that and the last thing I wanted to do was wear the stupid T-shirt. Sometimes it seems there are way too many people in the world who only feel satisfied when they are pointing out the flaws in others. Being on the receiving end of their nastiness can deal a KO punch to a person’s self-esteem. Don’t listen to the cruelty. That’s indicative of their problem, not yours.

Sometimes when we’re mentally or emotionally distressed, the burden of stigma causes us to try to fake normalcy. We pretend everything is great even when we know we’re struggling within. We want to avoid being labeled and ridiculed. Again, speaking from personal experience, that is a monumental mistake. Hiding the scars does not negate the reality of the wounds.

Since I’m not a mental health professional, the thoughts I express here are based entirely on my life experiences. In the early years of my recovery from a ruptured cerebral aneurysm, I dealt with a wide range of emotional, mental, psychological health issues. I can speak with authority from the patient’s perspective.

First and foremost: GET HELP DEALING WITH YOUR ISSUES. There’s no more shame in seeing a medical professional for mental health issues than there is in going to an orthopedic surgeon to get broken bones reassembled. If you don’t know where to start, make an appointment with your primary care physician. He or she may be able to help – or at least refer you to a resource that can.

Even if you can’t afford a doctor and don’t have access to free or low-cost mental health clinics, you need to reach out to others instead of internalizing your feelings and trying to hide the fact that something doesn’t feel right. You might start by writing a long letter to yourself to pour out all that you’re feeling. Sometimes that helps clarify your emotions and put things into perspective. When you’ve done that, confide in family members and friends. Let them know you’re not feeling like your usual self so they can be supportive and help you find avenues for getting professional help before the problems become overwhelming.

Of course, you may be one of the lucky folks who never has to wrestle with a demon. If you feel wonderful all the time, then bravo! Just understand that the person standing next to you at any given moment may not be having such a great time of it. Be concerned instead of judgmental when somebody close to you is feeling rocky.

Above all, realize that if you’re having emotional, mental or psychological health issues you are not alone. You have me.

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Today I exchanged messages with a woman who had an aneurysm rupture in her brain just three months ago. She was concerned because she feels like she’s on an emotional roller coaster since her bleed. She feels like matters are getting worse instead of better as time goes by.

Hers is a story with which I am all too familiar. My bleed was almost 14 years ago, but I remember all too vividly what that felt like. I remember going through a period where I put an incredible amount of pressure on myself to put on a happy face regardless of what I was dealing with at the time. After all, I was alive and hadn’t suffered any serious long-term consequences, so how could I be anything less than elated?

The reality is that even survivors have a bad day now and then. We may even have a few more of them than the average person. We have to deal with the everyday aggravations everybody faces and sometimes we have to manage that when our brains refuse to retrieve information we need to finish a task or insist on putting the wrong word in our mouths. And ever-present are reminders that we should be  happy because we are lucky to be alive. Sometimes it can be hard to feel lucky.

My advice to my new friend was to give it time and to continue communicating with other survivors who understand what she is experiencing.  I also suggested that she talk to her doctor about the emotional rollercoaster she has been riding and assured her that it is okay to let other people know that life isn’t perfect. It’s trippy what blood can do to brain chemistry. Add to that the trauma of the experience and the post-operative medications and it should be no surprise that our emotions get all out of whack.

Still, we just want to be normal again. Is that so much to ask?

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