Aftermath of Memory Loss

Traumatic Brain Injuries – Part 4 of 5
In The Name of Modern Medicine, cont.

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.

The psychiatrist said, “Your insurance company will not cover his care if you remove him from the hospital against medical advice.”

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.

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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.

51 Responses to Aftermath of Memory Loss

  1. Jill says:

    Sheri,
    This is one of the most shocking stories I have heard about ECT. I have read extensively about it and most reports state that it helps in many cases. To be fair, any medical procedure can fail as nothing is straightforward and there are no guarantees, but you have been through so much already that it is impossible for me to grasp. I found the other part of the ECT. All I can say is that before anybody signs the permission form to go ahead with ECT treatment, they need to have a couple of other opinions before allowing the treating team to go ahead.

    You will always be in my thoughts, Sheri.
    Sincerely,
    Jill

    • Jill – I did a tremendous amount of research before we agreed for Tom to have ECT and even more after the ECT. I’ve interviewed well over 200 couples wherein the same experience has occurred. Why should any medical establishment suggests ECT is wrong when medical centers, anesthesiologist and psychiatrist consider it to be a ‘cash cow.’
      No one knows, after all these years, how the human brain works and therefore, there’s nothing to back up the stories the doctors utilizing the equipment are telling you the truth. The 1 textbook doctors have to learn from was written by the individual who first introduced the machine. There’s no scientific evidence that ECT works.
      NAMI indorses many actions, philosophies and ideas as long as an organization continues to be a cash cow. Simply because a national organization approves of a procedure – that opinion must be taken as just that – an opinion.

  2. Jane Sadek says:

    Thanks for reposting this. it reminds me just what an angel you are and how much you’ve done for Tom. It reminds me how very, very small my minor frustrations are.

    • Jane – Yes, it’s been a long and difficult process and I work hard to never say, ‘Remember when.’ That simple statement can send Tom into a deep depression that can last for months on end. Tom doesn’t know what he doesn’t remember. Can you imagine not being able to remember anything from the last 55 years of your life. Not a glimmer of who you used to be.
      I’m appalled ECT is being promoted as the magical cure for all mental health problems and we have no way to track the number of individuals with the same outcome as Tom’s. If you hear of anyone talking up ECT, please have them either read my blogs or contact me. Thank you for reading with me.

  3. cindy knoke says:

    God this is disgusting. You had an absolute right to that chart. You cannot be denied access. Mental Health Patients Bill of Rights are to be given to every patient and family. This is so badly mishandled. Avoiding you was the stupidest thing to do. It is very scary when medical facilities of any sort close ranks against patients and their families to cover mistakes. I doubt that I would have your courage in challenging them. I am so very sorry Sheri.

    • Cindy – Thanks for weighing in on this subject. ECT is being used more than ever and now that Medicare and Medicaid are paying the full price, it’s past time for everyone to know the dangers involved I’ve had hospital CEOs, department heads, and every other person you can think of tell me I couldn’t take Tom out of a hospital but I’ve done it each time where I thought Tom was in danger. Although I have a strong legal background and conducted many medical malpractice investigations, I knew no one was going to destroy Tom more than they already had. Each time I’ve taken Tom out of the hospital, the scariest part for me was that we didn’t have another psychiatrist lined up that would accept Tom as a patient. The road traveled with bipolar has many hair-turn bends and switchbacks.

  4. sue marquis bishop says:

    Sheri. It is shameful how you were treated by mental health professionals! Sue
    Womenlivinglifeafter50.com

    • Sue – The staff of this hospital were not professionals in any sense of the word. The only thing they cared about was making money and lots of it. Each day Tom was in the hospital was $20,000+ and on top of that the ECT treatments, an anesthesiologist, the out-patient surgery suite and recovery, and on and on tacked on an additional $4,500 each day for the hospital and an additional $7,000 for the doctor. It’s all about the money and has nothing to do with practicing good medicine.

      • sue marquis bishop says:

        You have crossed paths with the worst if the worst it seems. I am so sorry you and Tom had to experience such treatment. You deserve the best. Sue Womenlivinglifeafter50.com

        Sent from my iPhone

        >

        • I believe the fact that we have full pay commercial insurance (which I pay dearly for) is the reason we’ve met up with some of the treatment we have. On the other hand, I’ve seen those without insurance and those with state and government sponsored coverage treated even worse (if you can imagine that). I’m one of the few that will stand tall and speak out. The first time I was the key note speaker at the national conference of the American Psychiatric Association I had great fun looking over the audience and watching doctors in their tux and rolex squirm in their seats and belting back Blue Label Scotch. You’ve given me a great idea for a blog. Now that makes me smile. Thanks – – –

          • sue marquis bishop says:

            I imagine you gave much to stimulate thought at APA mtg . Are you active in NAMI? Sue
            Womenlivinglifeafter50.com

            • Good morning, Sue. I was very active in NAMI for several years. I served on the Board of Directors of NAMI Arkansas as the Vice President and served as the chair for the legislative committee for all state and federal issues affecting mental health. I was also the Arkansas Director of the National Commission on Mental Health for 3 years. Through NAMI I became certified in the Family-to-Family program, becoming a leader for a local NAMI chapter, setting up informational booths at public events and I wrote hundreds of Op Ed issues and
              press releases.
              I broke away from NAMI in 2007 because we had some fundamental differences about how the Arkansas accounts were being reported. Additionally, individuals with mental illness and their families were begging for training and guidance and I fought hard for more training to take part in the communities with the biggest and hardest hit areas and NAMI was against that. Because of my 20 years of legislative interaction I had no problem facing the political powers that ‘be’ and knew I had strong supporters on the hill. (After all i still knew many people there. Two of my greatest accomplishments and the one I’m the proudist of is that I was able to bring NAMI to the first state university on a Arkansas University Campus and also set up a suicide hot line operational 24/7. Within two years we were finally able to open the presence of a mental health unit on campus staffed with professionals that could and would assess situations as they were presented. This program excelled and a profesional LCSW helped to continue to expand the program. I wrote for the local newspaper to keep the community up-to-date on what was happening at their campus and they were thrilled. The program was fully operational by

  5. gpcox says:

    It is so amazing to think that practices such as this exist in the modern world. What they took away can never be returned.

    • GP – You are so right. ECT is used now more than ever because once medicare and medicaid were approved for payment that seemed to put a stamp of greater approval on the procedure. It really gets me when I know their has never been a scientific study and never will be because researchers can’t ‘fry’ test subjects brains and measure the results. I’m convinced that most of what is going on with Tom at the present time is directly related to the ECT he underwent in 2001. Thank you for reading with me. I always appreciate it. Everyday there seems to be something Tom struggles with that’s a direct result of his ECT and it shouldn’t have to be that way.

  6. OMG Sheri. I sighed and cried through this post. What a brave warrior you are for your Tom. Being an advocate for your loved one is so important and it’s like nothing else matters and you have tunnel vision. With my daughter and also with my dad, I noticed that nurses and doctors recognize when the patient has a loved one that is well schooled in hospital rituals! I too never leave their side. I actually overheard one of the nurses say, “Why doesn’t that mother ever leave?” I was so angry that I walked up to the nurses station to answer her loudly. Then I spoke to the head nurse and also the HOTLINE at the hospital. They are there to help family members that feel the care is not appropriate. I would do it all over again except this time I would be more vigilant! Reading the chart was a great idea! Alex’s are thick like that also. I wanted to share with you that Alex started nursing school and has made it to her clinical stage. Her desire is to take care of patients and meet their needs because she’s been a patient and knows what really matters. This story for me has a happy ending and I pray that yours does as well. My heart goes out to you sweet sweet Sheri! Blessings to you! Wow you are amazing!

    • Michelle – Thank you for stopping by and reading with me. Alex has made great strides only because she had a mother that demanded she have the treatment she deserved so she could get well. It’s never easy getting the doctor’s staff or even the nursing staff to understand your loved one requires more care. Just this week I had to go head-to-toe with Tom’s internist for a simple x-ray of where he broke his ribs two months ago. I knew they should be healed but Tom has had several major laser surgeries to fuse parts of body (including bone, major organs, various tissues) around his body and not only did Tom want to know what was going on but Tom as well.
      The internist finally gave in when I told him I was taking Tom to the emergency room to get the x-ray. Funny how all of a sudden he could get an appointment the same day for Tom as the previouis request I made. It seems as if it’s somehing new everyday but I’m sure there’s not.

      • Girl I know what you mean because there is not way to REALLY KNOW what is going on in there. You have to have all of that. Because what if something? My Alex has finally learned to cover all her bases and I love seeing her stand up and say HEY you need to give me a CT scan of my kidney to see if something is and has it healed. You are right funny how you get an appt that day. Today Alex went to a new endocrinologist she has to go to an adult dr now and it scared us switching from peds but OMG she’s 20. She set Alex up for a new treatment and Alex was excited to do something new. I am very glad we went. Sometimes finding a new dr is like getting a new fresh start. I hope Tom is ok with his ribs. That can be painful. My friend broke 4 of hers and her dr said 5 months to heal. Isn’t it sad when you are sick how you have to fight to get treatment and the right treatment but never stop that’s the best way. I love you blog post! Hugs to you

        • Michelle – Yes, you have to keep fighting and then fighting for more. This past week I practically had to threatened Tom’s internist for another x-ray of his ribs. Tom’s still in tremendous pain and it scares me that with everything that has been patched within his body by laser due to medications eating his body, that the ribs may be breaking something open. I normally don’t have to fight the internist, but we had a knock down this time and I finally told him I was taking Tom to the ER if he wouldn’t write the order. Of course internist fear a ER visit because they don’t want it on their record that one of their patients had to resort to ER care when something could have been done at the office. I’m no longer afraid to play that card.

  7. Judy Hentges says:

    Dear Sheri,
    My name is Judy, am 54 years old, and underwent ECT treatments to what was once my brain, in Jan.-Feb. of 1998. I am no longer the woman I once was, but more, as they say, catatonic, or zombie-like. To describe the barbaric consequences to shocks, it is like, a deflated basketball. Much of the actual brain matter, is destroyed, along with my personality, and reactions, i.e. a hug from a friend. I would love to hug back, appropriately, and though I have received many hugs through my old peers at my parish, (even just today), I no longer feel the warmth, and love, I once did.
    I curse, terribly, since this thing, for over 15 years, I lay, and pray my rosary, and, on Sat. eves. or Sun. mornings, still manage to make it to mass. I have a daughter, now grown, 32. This dear woman never had a chance to grow up, and was elected to drive me to Mpls. Fairview Riverside, at the tender age of 16 1/2 for some treatments…17 in all. 3 inpatient, and 14 outpatient.
    I have gone to my regular GP doctor, as his own sister had this done to her. He is very knowledgeable, and also other psychiatrists/and a relative, who is a highly skilled surgeon. All say the same…no, it cannot be reversed.
    I do not remember my life – at all. I see my daughter, maybe once a month, and she cannot function normally, as she was greatly affected by this.
    There were odd circumstances regarding the choice that was made for me. My daughter and I enjoy horses. A woman from my parish had a horse farm nearby, and she said we could come monkey with them, as I was knowledgeable about them, at one time. This was in 1996-1997.
    Kathy, the owner, was the woman. After a time, she didn’t feel my behavior was quite right, and decided to call my parents. I was 39 yrs. old, and Kathy, literally chose to drive me down to Mpls. Fairview/Riverside, made an appointment with a psychiatrist, Dr. Wm. Clapp, and drop me off!
    My parents had no say, and I was in a difficult state. (There were incidents happening in my life, since 1990.)
    I do, however, recall meeting with this Dr. Clapp, and was the only other person in his office. Best as I can recall, I remember saying to myself, “It doesn’t matter where you’re at right now, Judy…this is NOT a good thing for you…don’t do it, don’t do it, don’t do it.”
    My parents were consulted, somewhere along the lines, and being he was/is a medical doctor, either or somebody, decided it should be done. I have talked with my dear mother about this, and, as she remembers, says, “Your father and I had no say. Kathy just called us, drove you down there, and dropped you off.”
    I have, since, discovered, other people,..who, knows someone, or helped somebody go through this in the 70’s, or somebody’s mother, etc…all but 2 have said it is…comments here…awful, barbaric, an awful, awful thing, one man thought he was running for president, “oh dear”.
    I know this is quite lengthy, and I am sorry.
    I use to play the piano, I almost had marriage in 1990, and I also use to sew, and genuinely enjoy people. I don’t recall likes and dislikes, except back from 1989. It was the best year of my life.
    I was 31, and my daughter was then, 8 yrs. old. I no longer even know her.
    We have both been so traumatized by these past 20 or so years, neither of us remembers
    ANYTHING correctly, since 1989.
    I have gone on long enough, and the brain matter, is, just, so deflated. I do take walks, but don’t really know why. Nothing is enjoyable anymore. Maybe I can laugh a bit at a movie.
    Some people say to me…oh…all this, or that, is in the past…Hey! I liked my past!
    Thank you for sharing your struggles with your husband, Tom. My own family has suffered greatly, because of this as well. God love you, for taking care of him as you do.
    Sincerely,
    Judy Hentges

    • Judy – Thank you so much for your honesty. You certainly didn’t go on to long as you mentioned. I wanted to wait and comment after I’d had an opportunity to read your response to Tom. I knew he would be in agreement with me in that you have every right to be angry about not having your memory. Tom had 3 inpatient treatments and I refused any further treatment by that doctor once I removed him from the hospital.

      Have you had severe headaches since your treatments? There’s so little written on the subject of ECT. I’m convinced no one knows how it really works and the medical profession certainly isn’t going to report anything negative.

      Thank you for writing and please feel free to contact me anytime. Sheri

  8. Robyn Lee says:

    Oh Sheri – this account of the incredible ordeal you and Tom endured — I am sitting here dumbfounded… I know these pitfalls in our healthcare system are so real – and your story just brought it so much to life in a very heartbreaking way. Tom with you by his side could not have had a more passionate advocate in this nightmare. The decision to have ECT for the Bipolar disorder must have been a difficult one, but you could never ever have known this would happen. I have made medical decisions with trust and faith as well… and also been sorely hurt and disappointed. There is just no excuse. Life is too precious and there has to be accountability and support when things go wrong. You have such a strong voice. I only hope you hare heard by those ears that can help start making changes. You are building awareness too – and that has to be a step in the right direction. Thank you dear wonderful lady – you are a force we need in the world today. x much love, Robyn

    • Robyn – Thank you for reading about our experience with Tom receiving ECT. It really was the worst decision I ever made about Tom’s care. I now know it’s all about greed in the medical profession. The doctors that administer ECT more than double their income and hospitals have no liability. Even today, no one knows exactly how ECT works (or not). Medicare and Medicaid have approved payment in full for ECT and now more and more patients are receiving ECT than ever before. There’s no governmental agency that requires accountability. I continue to fight a battle and advocate regarding the dangers of ECT.

  9. On May 7, 2010, I had a major hemorrhagic mid-brain stroke. I died on the table. When I “awoke” it had been only a few moments to me, but 10 days had passed. I had been up walking, talking, and doing many things I would NOT do if I had been aware. Rehab for me was fabulous and none of them, nor my family, ever gave up on me. My love of God and conversations with Him have increased my faith a dozen-fold. Stop by and drop me a note.
    I understand and pray for you two.
    Scott
    http://kindredspirit23.wordpress.com/

    • Hello Kindred Spirit – I’ve never given up on my husband, Tom, either. It was in 2000 that we went through the ECT and after years of rehabilitation and hard work he’s made wonderful strides. I’m the only family and yes, it’s been difficult at times as I’ve also been the wage earner, etc. but with my faith in God to hold me up when I thought I couldn’t take another blow, life is indeed good. Tom is once again able to do one of a kind jewelry designs with precious and semi-precious stones and works in his studio several days a week. I’ll be following your blog. I’m having hand and elbow surgery tomorrow but that doesn’t mean I won’t be able to read. I’m attempting to learn Dragon speech recognition software but we haven’t become friends yet:) Thank you for sharing with me. Sheri

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  11. Lynn Garrett says:

    Crying here. We’ll talk later. Love you.

  12. Bill Garrett says:

    Well, Sheri, I finally had the courage to read this installment (have not read the first ones). What a nightmare. I can’t begin to imagine what it was like. Thank you for being brave enough to bare your soul. It will touch and change many lives. I know a little bit about God’s wonderful grace. His grace is available to all who will call on Him. I am so glad you made that call through prayer and strength of will. You and Tom and mine and Lynn’s best friends. I did not have any men friends (I mean real friends) until I met Tom. Both of you are a joy to be with, but especially Tom. He’s my macho flick buddy. Lynn is your chick flick buddy. And sometimes we are each other’s couples flick buddies. That probably won’t make sense to anyone else reading this comment, but, hey, do we care? I just want people to know that if they have loved ones or friends who have been through what you and Tom have been through, they should make every effort to reconnect, love, and spend quality time with them. Who knows what friendships may be formed. I look forward to a long and enduring friendship through good times and bad. I love you both.

    • Bill – What a loving and supportive post. Tom and I both look forward to the times we spend with you and Lynn. It doesn’t matter if it’s conversation, sharing laughter that rings out true and delicious, propping each other up once in awhile, and oh yes – the fun movie dates. Most of all–the love and respect you both extend to the love of my life. You’ll never know how much it means to me to know that I now have friends at my side to help Tom when he’s having a tough or frustrating time. I equate those times to watching a robins egg in a fragile nest and the egg is in a precarious position. Now, instead of having only my hands to catch Tom should he fall, I know I have you and Lynn by my side. God’s Will, your friendship and unconditional love is Tom’s saving grace.

  13. Wow. I can’t even begin to image how you both have survived….
    5 years ago a coworker told me that she had ECT to treat her extremely resistant depression. I was stunned that such a thing was practiced any longer.
    You are by far the strongest woman I’ve ever encountered and I can’t thank you enough for sharing your story with us. It’s heart breaking but your determination and commitment is an inspiration. Your courage…it leaves me in awe!
    Blessings to you both!

    • Hi, Natalie. Thanks for stopping in and commenting. I decided to include our experience with ECT as part of my traumatic brain series. ECT is indeed an assult on the brain in the name of a medical procedure. There’s actually more ECT being performed today than ever. There’s no government regulation governing the procedure and the equipment itself falls under a vague FDA clause wherein it’s never been tested for safety. i.e. To test the equipment they would have to use humans!

      Tom and I are both strong advocates against ECT and speak regularly against its use. Thanks for your interest. And, through sheer determination and many hours of agonizing rehabilitation, today, Tom is back at his drawing board working on an intricate design for a one-of-a-kind piece of designer jewelry in gold and precious gems.

      • susielindau says:

        I am so glad that he is surviving the trauma and has improved! That is reason to dance!
        Thanks so much for dropping by the party. I hope you meet a lot of new friends! (clicking on links!)

        • Susie – The brain trauma physicians were amazed that dancing was one of the most effective ways to bring back eye/hand coordination with Tom and from there – after many months – the result – many other basic tasks were accomplished and today he’s back to doing the activities he loves the most. We’ve always loved to dance and most nights, you’ll find us dancing in our living room (around 2 a.m. or so) to music we love.

          And, yes – I love exploring the new links and meeting new people with new interests – what a great idea this is. I love it.

          • susielindau says:

            Thanks Sheri! I am so glad!
            Did you post the right link? The one I read was about taking him home with you and how hard it was….Missed the ballroom dancing!

  14. Mae Clair says:

    Sheri, what you and Tom have endured and survived is mind-boggling to me. You are both amazingly strong individuals who have come through the fire to begin anew. In that respect, Tom is much like a phoenix, experiencing rebirth with you to guide and help him. What a testament of love and marriage. God bless you both!

  15. Sheri, you leave me with a hollow feeling. I have never experienced anything this devasting, although mental illness scared my childhood and continues to haunt me. What would have happened if it had not been the fifties and my parents knew how much could have been done? I spent more than half of my adult life researching, but for us it was too late. But not for others. What is needed are more advocates who have the courage to stand up to the establishment and change the status quo.

    There are reported “miracles” but not enough to balance the scales of the damage done by our so called “health care providers.” What they provide are loopholes for fraud, paperwork to cover their fat institutional butts and little of no support when they screw up.

    I have heard of patients who suffered severe brain damage from automobile accidents. Consider that the average human only uses ten to fifteen percent of their brain power. It is thought that DaVinci used more than thirty percent. Science has learned that the human brain has many gray cells we do not use in our “normal” life … what I believe has happened to Tom is that those unused gray cells were activated. No, he cannot recapture the past, but like others, he can and has relearned many skills and you can both now create new memories.

    Perhaps you and Tom offer hope for others who beleive that their brain has “died” … I understand that it is not that simple. Often the brain does not wish to die and fights to save itself. With you and the help of others working hard to bring back a semblance of normality to your husband, his brain was able to regenerate and rebuild itself.

    I look forward to the last installment of this series.

    • Thanks for your wonderful comments, Florence. Brain injuries are always hard to understand and then put a mental illness in the mix and few doctors even wanted to talk with me. I always believed Tom and I had three strong elements going for us. We had unconditional love from the first time we met, I knew that after all we had been through — God was not going to steal Tom away from me, and we had excellent health insurance. I wasn’t about to take ‘no’ for an answer when it came to being told there was no hope for Tom. Like you — I researched mental illness and brain injuries for years on end — there’s still much advocacy work to be done.

  16. Patti – Thanks for your support. Our battles within the mental health system is one of the reasons I’m an advocate for all mental health care issues.

  17. Once again, you have pulled at my heart strings so hard, I can hardly imagine what you and Tom have gone through and ARE going through today. And what an advocate you are for him. It already sounds as if pulling him out of there was the best thing you could have done and I look forward to the next installment.
    Patti

    • Patti – The truly awesome news is that today, after much determination and thousands upon thousands of hours of hard work, Tom is hard at work at his jewelry’s bench designing one of a kind pieces of jewelry from precious gems and gold. We enjoy wonderful conversations, he loves to cook and I certainly don’t have a problem with that. Tom doesn’t have his memories from ‘beore’ but we’ve made a lot of great new memories since those terrible days gone by. In telling our story regarding ECT – I want others to know what the devestation can be – in spite of what the doctors tell you what probably won’t happen. In my opinion, the chances aren’t worth taking.

      • That Tom is hard at work making jewelry is indeed totally awesome and unbelievable after such a long time. But you guys did it! And having conversations and eating together and making new memories is what your happiness is all about. And, indeed, telling your story of ECT will hopefully save others from having to go through what Tom did.
        Patti

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