The days passed without Tom recognizing me and the staff treated me like the enemy. Had someone warned them, “Do not approach,” or perhaps, “Use extreme caution?”
Bipolar disorder and ECT were no longer the only thieves in the night, I became one also. I sat across from the nurses’ station for so many hours I became invisible to them. I watched them check on Tom from time to time, but there was no other care. I was waiting, like a predator, for just one staff member to carelessly leave the nursing station unlocked. All I needed was a few unattended moments, and I would be inside where his medical chart was stored. Slowly, the hours passed until my wish became reality. The half door of the nursing station didn’t latch.
Two aides were in the nursing area, eating M&Ms and drinking soda. I snatched his chart, tossed it into my tote bag and calmly walked out of the hospital.
After the destruction of Tom’s mind, I had no remorse about taking his chart. I felt entitled to do so. I rationalized that I only borrowed it to have access to the information no one else had the professional courtesy to share with me.
I went home and read his entire medical chart. I didn’t care that the wife was referred to as being difficult and demanding. What I cared about was that on July 31, 2001, his psychiatrist had written, “The entire left side of Mr. de Grom’s brain, his higher cortical center, is gone. My test findings are absolute. Discharge planning has been notified, and he will be removed to a custodial care facility.”
I raged. I panicked. I cried. I was paralyzed with dread for both of us. I knew, from what I’d read, if electrical current had destroyed the entire left side of Tom’s brain, that meant the higher cortical centers where thought, memory, and language reside—everything that made him the man he’d been—was gone. Billions of cells had been destroyed as surely as if they had been excised by a surgeon’s scalpel.
My simple prayer had become, God’s will be done. Often it was all I could think of to repeat over and over. I wanted to ask God for more and expected more. I fumed, was crazed, and demanded to know why this had happened to us. This disease had torn us to shreds for the past fifteen years. How much more could we survive?
Before visiting Tom the next day, I’d put my plan into place. I had removed him from hospitals against medical advice before and I would do it again. I had no guarantee the man I loved would ever come back—but I would not allow for him to be put in a convalescent home.
I returned to the hospital and entered Tom’s room. I’d passed through these halls so many times, but this time would be different than any other.
The charge nurse realized I was preparing to leave the hospital with Tom and, suddenly, the psychiatrist mysteriously appeared. It had been days since he was available.
I promptly replied, “I don’t care if you or the hospital or any of the staff are ever paid.” Enraged, I added through gritted teeth, “You have been paid. You took a man’s life, as clearly as if you had killed him.”
Getting Tom dressed, packing up his possessions, and securing a wheelchair took less than an hour. While the staff watched, aghast, I wheeled him free of the psychiatric unit, and we headed out to meet our destiny head-on as a couple. I knew that whatever mistakes I made in the future, none would have the serious ramifications of the worst one I’d made when I gave permission for him to have electroconvulsive shock therapy.
My mind churned as I escorted my husband from the hospital. How would I keep him safe? What were we going to use for medications? How would I help him remember us as a couple and himself as a father and a grandfather? How was I going to teach this genius trapped in his mind things I didn’t know myself? Once again, I prayed, God’s will be done.
I drove us home. How strange it was to say, “Tom, this is where we live. This is our home. Although we’ve lived here only a short time, we chose this home together and rebuilt it to become our dream home.” It had been over twelve hours since he had made a sound.
We went inside, and he was overwhelmed when our shit tzu, Teddy, came running to greet him. They had been great partners. I could tell Teddy sensed that this was not the same man who had been his master by carefully moving around him, yet he never left Tom’s side.
During the first months Tom was home, I never left him alone. His despair at having no memory was traumatic.
He could not mow the lawn; he now longer remembered how. He could not work on jewelry, stained glass, woodworking, photography, or any of the other arts he’d excelled in for well over thirty years because his memory had been stolen from him. In addition to no memory, his hands shook uncontrollably.
Feeding ourselves seems so natural once we’ve mastered the task in our formative years, but now Tom didn’t recognize the food on his plate or know what to do with it.
I brought out picture albums and showed him pictures of his children, grandchildren, our wedding, and the life we had lived together for fifteen years. Tom’s memory loss extended beyond fifteen years. He no longer remembered the joy of holding his newborn daughters in his arms, of teaching them to roller-skate, ride a bike, watching them graduate from college or how proud and overjoyed he had been walking each of them down the aisle on their wedding days. Fifty-five years of memory was gone.
He had grown up in North Carolina, and I drove him down roads he once introduced me to, but nothing was familiar to him. His despondency and desolation continued to grow. When people asked me why I didn’t admit him to the long-term care facility at the Veterans’ Administration Hospital, I no longer even bothered to answer them. My energy and sparse resources were spent loving and living with Tom and anxiously awaiting the day when he might see a shadow of something, anything, which he remembered.
He’d forgotten his extensive computer skills, but he would wander in and out of his office as if he knew he’d once been at home there. His drafting board had unfinished designs on it. His bookshelves were filled with books he didn’t recall reading. His leather desk chair was foreign to his touch.
Our first visit to a grocery store after his ECT seemed, for him, to be another planet. He was bewildered, picking up one thing and then another, but he always put each item back on the shelf.
Tom slept a great deal during those early years after the ECT, and that may be what saved the little that remained of his survival skills. Often when he slept, I retreated to my gardens and prayed. I had meaningful, serene conversations with God among my flowers with the sun on my back. The setting radiated goodness and blessings, but most of all I felt hopeful. It seemed the combination of prayer, love, and strength might be enough to bring Tom back to me.
The ECT had been a physical assault on both his brain and his spirit. The trauma is still immeasurable.
Years of speech, physical and cognitive therapy has helped him regain living skills. The months my husband spent in the brain injury unit of a major medical center further verified for me that electroconvulsive shock treatment is indeed a traumatic brain injury.
A psychiatrist that is licensed to perform ECT makes twice the money of a doctor who isn’t. Medicare and Medicaid have both approved payment for this procedure. We’ll never know how many have received ECT as no reporting is required. Equally important, we’ll never know how many have lost their memories, like Tom. Or how many have ended up in convalescent homes because they went through ECT alone and have no one to advocate for them on their behalf.
Please join me on July 16, 2012 as I conclude my discussion of traumatic brain injury and the progress we’ve made and additional developments in research.
Have you or someone you know experienced a brain trauma? I’d love to hear from you.