Our Stories

My brain was bleeding.  I sat at a friend’s kitchen table, right cheek against the cold wood, images of the most recent space shuttle disaster flickering across the T.V.  I couldn’t feel my left arm.  I was dizzy and weak and the room was getting darker.

My shirt was wet.

I thought “my brain is hemorrhaging and I’m about to die”.

My life didn’t flash before my eyes.  I thought instead of my death at such a young age, forty-three, and what I hadn’t yet accomplished.

And I wanted to see my cats and my partner again.

Four or five years earlier, which was sixteen years ago, when dizzy spells prompted a visit to one of the approved doctors within my HMO, I received a script for anti-vertigo medication.

As periods of dizziness continued to haunt me, I paid out of pocket to visit my former physician who directed me to a neurologist.  After riding the gamut of balance disorder tests designed to send even the strongest state fair midway bravado into a state of cold chowder queasiness, an MRI revealed suspicious blood vessels within my brain.  The doctor seemed vague, perhaps wishing to divert my mind from possible danger.  But I was concerned.  My brain was no longer the secure lump of gelatinous fiber encased within the confines of my “hard as rock” skull.

I was a time bomb.

And then one night I got dizzy.  Real dizzy. And my left hand seemed not to be my own.  I could move it, and I could feel it when touched, but it was not my own hand.  I seemed to be grabbing for something that wasn’t there.  Sort of like reaching for a railing to prevent a fall only to find your hand grasping at nothing.

And three days later the shuttle blew up. And so did my brain.  Or so it seemed.

My diagnosis, Cavernous Hemangioma, has been likened to a clump of tangles worms or a raspberry. Either way, they are a vascular malformation of blood vessels and my brain had twenty-seven of them, all small bleeds in my personal history. They don’t bleed profusely as other aneurisms do. They ooze blood instead. But either way, a gush of blood or a sweating vein, neither is good.

One is always taken aback when a part of their body fails. We take for granted the idea that our body will always be functional, that loss of limb or motor function happens to someone else. Young people aren’t supposed to find themselves incapacitated, their body shutting down, changing them from active extrovert into a bedridden hermit within twenty-four hours. As an artist I assumed I would always weave, always play piano, spin my own yarn, hold a calligraphy pen. Now my body was no longer a team player.

During multiple visits to the neurosurgeons waiting room I sat stiffly in the cold isolation of fear, sharing nothing with those around me. Each of us was lost in our silence, almost as if relaying our realities would lessen our chances that maybe a mistake had been made, that somehow we could escape the inevitable that each of us faced. With each of us something was terribly wrong and neither of us could escape it.

Everybody has experienced a broken leg, or knows somebody who has. We know what to expect. But the brain is different. There are no jovial stories over a mug of beer, no easy answers to the questions of process. Healing is significantly different with each brain injury. In my case my left arm was affected. A millimeter over and it might have been my leg or the whole side of my face. I got out lucky.

I had memory loss, speech difficulties and embarrassing moments when simple words such as elevator or dish washer were no longer available to my searching brain and I would be left trying to describe the subject through its actions or use. My every day conversations had turned into a bad party game like “Pictionary” or “What’s My Line”.

Back in 2003, when I began my journey, there were only five Gamma Knife machines in the United States. The Gamma Knife is utilized when actual surgery would be difficult or impossible. Gamma rays are shot at the subject from different angles and individually they are too weak to cause damage. But when the rays overlap they are strong enough to kill tumor cells or close blood vessels. Rhode Island had one of the five Gamma knives in the United States. And my brain surgeon was one of the men who invented it. As I said, I was lucky.

My two hours connected to the Gamma Knife were unexceptional. There was no sound, no sensation, and no flashing light to let me know the process was underway. The halo screwed to my skull was locked to the device and as I lay there thinking about gamma rays and old sci-fi movies, wondering if I could now glow in the dark or become invisible, my skills and abilities, knowledge and personal history were being wiped clean from my brain. Before the treatment I could read. Afterwards, I could not.

The journey back from a brain injury is a very long slow tedious process filled with frustration, anger and fear. There are the months which turn into years before any progress is seen. The brain can re-path around the damage and new neuron pathways can develop. Other parts of the brain can learn to move limbs or retain memory again. But the brain can only re-path when the survivor is asleep. My days of twenty hour naps slowly evolved into eighteen hour naps. Then sixteen, and then eventually eight. And when I awoke I could no longer fold a blanket. There were too many corners and too many sides. I couldn’t play piano. I couldn’t knit or spin or weave or spell or write or cook or turn the faucet on and off. All common knowledge was gone. The simplest tasks were as complicated as brain surgery.

There were months of self-loathing and years of depression. I lost my job and worked for years at dreary temp jobs, putting labels on soda cans and endless filing, as I re-learned language again. Like many survivors my thoughts teetered on the razors edge of suicide. My passions were still there with no way to feed them and I cursed God and wished I had died.

I cried a lot.

Every day I played memory games and ever night my eyes scanned lines in my favorite books, desperate for words to pop out. And as words began to pop out and then connect I couldn’t remember from one line to the next what I had just read in the previous sentence. I kept lists of characters and how they related to each other.

My anger crawled up through my despair and I began fighting for my life again. I sat at the loom and threw the shuttle again and again and again. My body hurt with the exhaustion of leaning over to pick it up each time.

I would cook food and burn things. Some parts of the meal were over cooked and some parts were still raw. Favorite house plants dried up and died.

Seizures took me to the hospital over and over as we searched for the right med in the right interval in the right dosage.

And I got angrier and angrier. But that anger hardened into something else- an unrelenting resolve. And I pushed and I pushed and neuro-fatigue would bring me down and I would sleep. But I would wake and push again.

I don’t remember at which point the neuro-surgeon mentioned the malformed blood vessel on my brain stem which cannot be treated because it’s located in the section that controls my heart and lungs. I don’t remember when I learned that it will eventually bleed again and when it does I have only a twenty percent chance of living. I know the knowledge came to me but I don’t know when or where.

My partner and friends didn’t see the complex inner struggle with which I lived. They laughed as I mangled words and meanings. They would pretend everything was normal when I fell asleep at dinner or spent an afternoon sleeping on a friends couch. They enabled me as I stumbled or dropped food on my lap.

But in their well-meaning way, those who demonstrated their love for me were only trying to show me that I was no different in their eyes, that I was loveable in spite of my new inability to play the piano, the loss of sharp wit or my slow cumbersome speech patterns.

But I was different. I had experienced mortality. My passions were not a bottomless well. My time and my ability to express myself would run out. We all face the end. We have a limited time to make a difference. I was lucky to be reminded of this.

This was my wake-up call. What is yours?