Fifty-Five Years of Memories Stolen

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.

He received his first treatment and slept for three days.

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.”

It was clear the man I knew was gone.

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.

My heart shattered more each day and my mind ran a maze that was without end.

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.

About Sheri de Grom

Retired Fed/JAG, 5 yrs. on Capitol Hill. Former book buyer for B and N. Concerned citizen of military drawdown. Currently involved in mental healthcare reform, health care strategist and actively pursuing legislative change wherein dual retirees are exempt from enrolling in Medicare at their own discretion without losing tertiary healthcare benefits. Monitor and comment on Federal Register proposed legislation involving Mental Health, Veterans Affairs, Health and Human Services, Medicare and rural libraries. Licensed OSHA Inspector to include Super Fund sites. Full time caregive to Vietnam era veteran. Conceptualized, investigated possible alternatives, authored, lobbied for, and successfully implemented Title X, Section 1095 (known as the Third Party Collection Program of Federal Insurance).
Aside | This entry was posted in Brain Trauma, ECT, Electroconvulsive Shock Therapy, Psychiatrist, TBI, Traumatic Brain Injuries and tagged , , , , , , , , , , , , , . Bookmark the permalink.

21 Responses to Fifty-Five Years of Memories Stolen

  1. Diane says:

    This is devastating. I just found your 15 years of memories and my ability to make new memories.blog and have been reading about Tom’s injuries. I agreed to ECT which destroyed my mind. I lost 15 years of memories and my teaching skills, and my ability to make new memories.
    The pro- ECT propaganda is out full force and each day I am on Twitter challenging those who advocate for it. It horrifies me. The latest Twitter dialogue insisted there was no long term memory loss and that people’s memory might improve after shock. It enrages me. If you are on Twitter, follow Richard Bentall, who opposes ECT and is attacked for that.
    How is Tom today?

  2. cindy knoke says:

    This is heart wrenching Sheri~

  3. JK Bevill - Lost Creek Publishing says:

    That is terrifying. I wish you both well!

    • Thanks for reading the ECT blog. One of my blogging purposes is to bring to the forefront many of the problems with today’s mental health care. I will be blogging about additional mental health issues in the near future. We continue to live with my husbands memory loss on a daily basis and although it’s been 12 years and he’s made a lot of progress, we still run into blank walls.

  4. Lynn – I never knew how much was gone until Tom’s mind was gone. Today we see glimpses of our old Tom – the man with the instantly funny come-back, the brilliant artist, the gentle man but yes – there’s many hurdles left to overcome. Thanks for being at my side as a terrific friend.

  5. Lynn Garrett says:

    Speechless. Heart in throat and stomach on floor. Oh, Sheri!

  6. I had no idea. I just read part 4 and had to go back to read all the parts before and am heart broken for you and your family. Devastated.
    Sending you hugs! Your resilience and commitment to your family is an inspiration.

  7. Tami Clayton says:

    Sheri – my heart goes out to you and your husband. What a journey you both have been on! I’m so sad and angry for you. I work in the mental health field (with kids and families) and while I don’t work in a hospital, I could not imagine treating someone the way you and your husband were treated. I’m glad you’ve been speaking out on ECT and sharing your story.

    • Thanks for leaving a comment Tami. We’ve had some great mental health care for Tom and his recovery is a result of such care. It’s been a long road and we accept that he’ll never have his old memories returned to him. I’ll post Part 2 of the ECT portion of my series on traumatic brain injuries next Monday. Unconditional love has pulled us through many a dark and dreary time.

  8. wow, what an agonizing story. You ought to make this into a book. Devastating. So very sorry for you both.

    • Jenny – Thanks for stopping by. Yes, the experience was agonizing and Tom and I still miss the loss of the memories that we once shared. With unconditional love and years of hard work via a brain injury unit and together – we know just how how precious the memories we make now are. We both want everyone we can possibly reach to know that ECT is not a treatment option – it can go so wrong – as it did with Tom.

  9. Sheri, even those of us who think we can express anything in writing, are often left speechless. There are also times we find kindred spirits in the most unexpected places. Life lines reach out, cross over and connect us in ways we can never understand. Know one of those lines has crossed our paths.

  10. Laurie – It was slow going for a very long time–years. Tom had definitely suffered a traumatic brain injury in the name of medicine. He was so traumatized by coming off all of his medications plus the ECT, he seemed at times as if he were in a comma – – only awake. In next weeks blog you’ll learn how we gradually grow to accept life as it presents itself. However, long term – Tom was finally admitted to a brain injury unit where he was taught how to feed himself, tie his shoes, use a telephone, and become the person he used to be. He tells me, “What worries me is that I’ll never know who I really was.” And, I’ll admit, a truer stratement has never been said.

    Our three year old grandson walked up to Tom one day and said, “Pa Pa, I know you don’t remember, but I was a beautiful baby.” It was years ago when that happened – that grandson is 14 now, but that was a bright spot during a very dark time in our lives.

  11. booklaurie says:

    Oh, wow, talk about heartbreaking! Has Tom gotten back any of his memory, or is he still just taking it on faith that you’re the woman he fell in love with way-back-when?

  12. Mae Clair says:

    Oh, Sheri, this is so heart breaking! I had no idea your husband had gone through so much. I had a close business associate who was biopolar and, sadly, he ended up taking his own life. I can’t imagine what you must have felt when you entered that hospital room and your husband didn’t recognize you and responded the way he did. I hope the second part of the story is infused with a sliver of hope. This is just so devastating!

    • Hi Mae – It’s amazing. We never know what we can survive until we face the situation. Tom’s memory loss has been a tremendous challenge both to Tom and to me. I’m turning our story into fiction, leaving the medical portion intact as it actually happened. I want others facing our delimia to know there’s always a way around all the road blocks set up by the mental health system. Ninety percent of all marriages is the latest statistic released for divorce when one person is bipolar and it doesn’t have to be that way. It does take unconditional love.

  13. Yes, you’ve told me most of this story before, but it didn’t stop me from crying again. This is one of the saddest tales I’ve ever read. I remember when I saw A Beautiful Mind for the first time and thought is was one of the saddest movies I’d ever seen. I am so sad this has happened to you two and look forward to the next installment of the story. Having lived and worked at Napa Mental Hospital for a month when I was a sophomore in college, mental problems have always intrigued me but I realized I couldn’t continue in that realm because it was too depressing for me.
    Patti

    • Patti – Something I learned early on is that with unconditional love, anything is possible. Yes, I’ve had days when I’ve wonderd how we’d survive, but we have. So many bipolar disordered individuals are looked upon as freaks and as violent individuals. Those are often the ones that self-medicate and/or don’t have anyone that care about them. The mental health industry is a cruel one and I’ve fought many a battle on Tom’s behalf and advocacy was what first took me to Capitol Hill – Tom’s retired military and I always knew that Tricare and the VA would never be able to give him the care he needed or I wanted him to have – thus I made sure we had excellent private heath insurance.

      The hardest part for me is that Tom and I have had so many wonderful times in our lives and now I’m the only one that remembers them. I have to be careful not to say, “Remember when . . .” . . . because he doesn’t. In the years since the ECT and the road to recovery, we’ve worked hard to build new memories and a new life. Thanks for caring.

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