Traumatic Brain Injuries – Part 3 of 5
In The Name of Modern Medicine
Fifteen years before my husband, Tom, lost his entire memory, we’d had a perfect wedding. It was the spring of 1986.
We were wed in the splendor of the gardens of La Playa Hotel in Carmel-By-the-Sea, California, rejoicing that at long last, we’d found each other. As we danced to After the Loving, I’m Still in Love With You, we celebrated finally coming home. We talked of being so at ease with this new stage we were entering as a couple, of feeling just plain happy.
My father, my very own ‘John Wayne’, whispered as he walked me down the aisle banked by white roses and rare orchids to join the love of my life, “It took you forty years but you finally got it right.”
I turned and said, “I know, Dad. I’ve never been happier and never more at peace with myself.” And, so proud of this man who’d won my heart.
My new husband, Tom, was a master artisan at the time, known for creating one-of-a-kind jewelry for movie stars and affluent clientele. He was also a renowned glassblower with pieces in collector galleries who also took commissions for large pieces of stained glass in commercial buildings and homes.
I often felt I was living in a fairytale come to life—and then, the bottom fell out.
During this same time frame, my career was taking off. My work, though incredibly fulfilling, also involved extensive travel and I now wanted to stay closer to home. Little did I know that Fort Ord, California, would close within four years of the time Tom and I married. We’d thought innocently that we’d retire on the central coast and our fairytale would continue.
My career moved us from Monterey, California to Washington, DC, and then the Oregon coast and a year later to North Carolina. We were beginning to feel like ping pong balls. I hadn’t minded the frequent moves when I was single, but I had others to consider now.
Tom’s disease—bipolar disorder—appeared silently, a thief in the night, to steal him away. He was diagnosed after many erroneous diagnoses while we were still living in Monterey.
I married Tom in sickness and health and never had my vows become clearer than during the years of fighting his bipolar disorder. Unfortunately, it continues still. Bipolar disorder has no known cure.
Tom has often told me, “I have no hope of ever getting better, of being whoever it was that I used to be, and I have no desire to live.” He’s pleaded with me, “Take the life insurance money and be free of me once and for all.”
My reply has always been the same, “I love you and I always will.”
One dark night, both mentally and atmospherically, fifteen years and an entire coast away from Tom’s first hospital admission for his disease, we packed for yet another hospitalization.
We arrived in the assessment room for psychiatric patients and within minutes of taking down Tom’s mental health history, the evaluating psychiatric nurse called in another psychiatric assistant. The two of them began discussing electroconvulsive shock therapy (ECT) to us immediately.
Tom looked more frightened than I had ever seen him. For the first time in my life, I was speechless. We had agreed years before that Tom would never have ECT. Too many things could go wrong. We both considered it too dangerous.
I admitted Tom to the hospital that awful night and later, sitting on the curb of the hospital parking lot, I reached into the brown bag—the one where the staff had placed his clothing and his wedding ring. I took Tom’s ring out and held it gently in my hands, praying while I wept, God’s will be done.
The following morning at the hospital, the psychiatrist and his assistant reiterated the pitch for Tom to have ECT. The doctor enthusiastically added, “It will give both of you the quality of life you deserve.”
What he didn’t say was that sixty years after the first ECT was administered, physicians still didn’t know exactly how ECT worked or why.
The doctor also said, “Because of the severity of Tom’s depression, it’s my opinion that bilateral ECT will be more effective than unilateral ECT.” He added, “I suggest using a higher voltage of electrical current.” Neither the psychiatrist nor his assistant disclosed that the electrical current passing through Tom’s brain could light up a 100-watt light bulb. The psychiatrist discussed electrical volts passing through my husband’s brain as if they were adding cups of sugar to a cake recipe.
I was sure I’d been handed a silver platter with two sealed envelopes on it. One read, “Tom will commit suicide in less than one year if he does not have ECT.” The other read, “His medication regimen will destroy his major organs and he will die within two years even if he doesn’t commit suicide.”
I told the psychiatrist, “I need a week to do research before I decide what to do.”
The week of research was a blur. Time breathed fire down my neck as I labored to find legitimate information.
I talked with many of Tom’s prior psychiatrists, and their consensus was that ECT was our best alternative.
I visited him at the hospital each day. He was unbearably ill and more suicidal as each of his medications was discontinued. Nothing I did consoled him. The psychiatric assistant stopped by his room each time I visited. It seemed they were playing on my already virulent fears.
The staff wasn’t interested in his general medical history. They only wanted me to know that his treatment sessions had to be scheduled in advance in order to optimize use of their costly same-day surgery suite. I believe—and still do—that their only concern was making money. No one cared that Tom’s family history of sudden death caused by heart failure before age fifty placed him in a high-risk category for receiving ECT.
As I researched ECT, I also learned at least ten governmental agencies approved the use of ECT for treatment-resistant depression. Some of those agencies included the largest health organizations in the nation: the American Psychiatric Association, the American Medical Association, the National Institute of Mental Health, the Surgeon General’s Office, and the National Mental Health Association.
What I didn’t know was that those with a financial interest in ECT had conducted most of the research studies and were responsible for the outcomes reported. Now, fifteen years later, I wrestle with why I didn’t recognize the studies were biased. Was I so desperate to get the Tom I married back that I glossed over the information about who actually financed and reported those studies?
Tom and I both had to sign the informed consent for him to receive the ECT treatments. What a joke! He was having a difficult time comprehending where he was and what was happening, let alone able to sift through research and make a life-altering decision. I concluded there was no such thing as informed consent.
Tom was to remain in the hospital for an initial series of treatments and then receive continuing treatments on an outpatient basis.
On the fourth day my world shifted in a way I’d never expected. Entering Tom’s room, I found the love of my life staring into space. Reaching across the bed rails to give him a quick kiss, I was stunned when he snapped, “Who do you think you are? I only kiss my wife.”
The haunted look in his eyes reflected the emptiness of our fate. Prone to panic attacks, perspiration covered my body. I had entered hell on earth. My husband was an empty, burned-out shell of his former self.
I said to him, “Hey, what’s going on? It’s me, Sheri.”
I quietly laid magazines on the hospital table only to find them flying across the room from a brutal sweep of his arm. I had never seen this Tom before.
I asked his charge nurse, “What’s going on with my husband?”
She replied, “Oh, it’s just a phase. He’ll be okay tomorrow. Why don’t you run on home?”
I asked him, “Have you eaten?”
“I don’t know.”
“What about medications? I prodded.
Again, “I don’t know.” He stared at me with that fixed vacant gaze and added, “Why do you want to know?”
I told him, “I’m concerned.”
His cold response, “Well that makes two of us.”
I sat rigidly in a chair in his room for the remainder of visiting hours, but we had no further conversation. I watched him silently and prayed for a glimmer of the man I had visited only yesterday.
Before I left the hospital, I demanded to speak with the psychiatrist or his assistant, but someone else was on call for them, and they asked me to leave a message. Since I knew they were never both away from the hospital at the same time, this further agitated me. My fears mounted to a crescendo of despair.
Four additional days passed during which I failed to spot so much as a shadow of the man who was my husband. Tom no longer knew who I was or why I was there. Worse, this new Tom didn’t want me in his hospital room.
Where was Tom’s doctor and what had happened to the love of my life? How was I going to manage this critical turn of events? The man I loved no longer knew himself or me.
Please join me July 9, 2012, for the continuation of why I believe electroconvulsive shock therapy should be discontinued as a treatment choice.