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You Disappear

Comments [11]

July 24, 2014

You Disappear

Cover art for Christian Jungersen's novel, You Disappear, published by Nan A. Talese, Knopf Doubleday Publishing Group, 2014.

I have to admit that when I received a complimentary novel from Doubleday about brain injury, I was skeptical. How could anyone who has not been through a brain injury journey write a story about this intimate, transformational journey?

Meet Christian Jungersen. He did it.

You Disappear is narrated by Mia Halling, wife of Frederik, in Eastern Denmark.

A brain tumor causes a change in Frederik’s personality that wreaks havoc on his family, friends, and the private school where he is headmaster. The novel masterfully shows how little people are willing to understand a medical condition when it personally violates them in some way; how sinister brain injury is with its ability to wipe out a person’s identity — including all his good work and past relationships — and how deeply and drastically family members change in response to a loved one’s brain injury. Take the wife who decides to cheat on her brain-injured husband with a mutual friend, for instance, or the son who supports the dangerous and zany ideas of his injured father.

With incredible insight, Jungersen expresses the inner thoughts most people won’t say out loud after a loved one’s brain injury. In particular, I was struck by how many quotes could have come directly from my own mouth. In the beginning, Mia thinks: “The only person who mustn’t get angry is me. If I succumb, everything will fall apart.”

The author also starts several chapters with clinical studies and information to explain Frederik’s condition and behavior, including a few tid bits I had never heard about like this one: “One out of every eight people over 45 has a brain injury without realizing it, according to a Dutch study reported in The New England Journal of Medicine.” This particular statistic was not shocking to me given all I now know about the brain, behavior, and compensatory strategies … and as a woman well past 45, I’ve often thought I might have a mild brain injury myself because of my poor short-term memory and the difficulty I have concentrating and maintaining close attention!

Many perspectives are shared in this book: mother, father, child, friend, colleague, and community — each relationship depicted with raw honesty. My sympathies changed, as I tore through this story page by page, relating to each and every complex emotion driven by unforeseen circumstances, as lives are thrown out of control.

I won’t give too much more away, but I will say that this passage struck the heart of me:

This is a dark, intriguing storyline that is unfortunately the true story of far too many people in the world whose lives come undone because of brain injury. It ends realistically, heart wrenchingly, but not without shedding light on a better way to cope, at last.

As a TBI caregiver, author, and speaker on brain injury topics, it’s my wish that stories shared will resonate and educate people not affected by brain injury, so better treatments and more support will result. But books about brain injury are a hard sell to the general public. This psychological thriller may be the one to break through.

Misha Hoekstra translates You Disappear from Danish to English.

Comments [11]

I was thankful to read the section that you had from that book that struck the heart of you "The hard part comes when the adrenaline recedes..." That is me. I am the Mom of a son with a severe TBI and multiple other injuries. I was in shock while he was in the hospital, and I swear that shock lasted the entire first year. Reality hit so fast and hard I never had time to digest it. I pushed through it never thinking. But as time went on, the loss and loneliness and sadness appeared and I cry at the drop of a hat. Every therapist, counselor, and nurse and physician should read this to better understand the TBI dynamics in order to help us cope and move forward with our lives. Thank you Brainline for sharing and helping me more than any therapist or counselor ever did.Moving forward takes a lot of hard work and drive and determination, just as the hard work did for my son as he pushed through all of his therapies after his TBI. It is hard work . . . and you have to wake up each day being willing to just try. 

Jan 11th, 2017 10:48am

I suffered a severe TBI almost 4 years ago and have been struggling to get my life back. One of the biggest challenges has been the changes to my abilities as well as the changes to my overall personality and how I viewed myself. No question about how impactful these changes have been, to myself and family, as well as the daily battles I have waged in an attempt to reclaim my life. With that said, you can find peace and hopefully a purpose but it will take time and you must accept the fact it will different, as you are now different. If you expect to be, and do what you did prior to the injury you are setting yourself up to fail. And those around you will suffer as well. Acceptance is a buzz word used all the time pertaining to a TBI but in reality it is just being honest with the new you and hopefully finding what that means to you. It can be, for some, a time of great discovery and fulfillment, if you take it as an opportunity for growth. Just do your best everyday. Let go and move forward. 

Jan 10th, 2017 11:51am

I wish that this site had been available to me when my husband was first injured. I was warned at the hospital that there could be some personality changes, but no one told me what kind of personality changes to look for. The man who returned home from the hospital was so totally different from the man that I had married. Although he was no angel before the closed head injury, at least he had some degree of a conscience and a little bit of empathy. After the injury, he showed almost no emotion, unless it was extreme frustration and rage. His thinking became very concrete, yet his ability to function in a highly technical job seemed to get better. In other areas of functioning, he demonstrated poor judgment, poor impulse control, sexual disinhibition, reckless spending, a general disregard for others, lack of conscience, lack of remorse, zero empathy, etc.

I never understood what was going on, but did the best I could to hold the family together and give our life some semblance of being normal for thirteen years. We even had another child during that time. He tried to parent, but simply couldn't sustain the effort and soon began to not only neglect this child, but also put him in extremely dangerous situations, almost as if he wanted an accident to happen. He also had outbursts of rage.

He is the one who left the marriage. The separation occurred when I told him that he needed to see a psychiatrist. I realize now that it was probably a neurologist that he needed. His behaviors, and the way he was treating our youngest child, was so dangerous that I had to set limits. I had been walking on egg shells so as not to set him off for thirteen years since his injury, but when it comes to protecting a child, a wife has to speak up.

Marital separation and divorce was probably every bit as difficult as being married to a man with the type of post-head injury symptoms, but I look back and realize that he did us a favor when he walked out. He rarely took advantage of the visitation privileges he had with our son. Was this because he realized that he wasn't capable of parenting effectively or was it because he simply didn't want to parent?  Things would have been better if he had agreed to work with a psychiatrist or neurologist, but since he was not willing to do this, it was better for him to leave.

At first, after a job colleague who was also a psychologist showed me a list of symptoms associated with a specific type of head injury, I was angry at not being given more specific information by his doctor about the behavioral symptoms that might occur after his head injury. Now I look back and realize that there is no way to predict what kind of behavioral symptoms a TBI patient might develop, if any at all. In fact, trying to predict this, and preparing a wife for it, might create a self-fulfilling prophecy or a tendency to look for problems. I think that a type of case management approach that involves some outreach to the family on a yearly basis (or more frequently) would work best. In my ex-husband's situation, these behavioral symptoms became worse over the years. I think that outreach might have led to an intervention that could have prevented all the trauma that I and my children went through.

Jan 19th, 2015 7:04pm

I am glad for your review Rosemary. I will have to reel in the time to stop and read this book. On a personal note, as a survivor of a TBI, I only can wish that I had the support generated by so many families in the times of healing. By reading such myself, maybe , just maybe I can get a final vision of what my family was faced with during, and is faced with after the ordeal I experienced first hand. God has a special place for those who can endure the strain of being so supportive.

Aug 5th, 2014 3:44am

I have come across this site by sheer accident ! Yet at the same time I'm going through hell due to fear. 3 years ago my first love and eldest sons dad suffered a T.B.I and after 18 years woke out of a 3 day coma and asked I look after him ! Extremely spiritual and very bizarre but I did and now we have a 7 month old daughter, with my 3 other children inbetween and his 2 sons with his ex ! The man I knew is there within and that's what I can't give up on. The man today has become threatening, controlling, devious and I am scared. Still my love for him can't let go ! Almost unconditional but my kids deserve a better, stable, loving life. Sites like this just confirm the knowledge I've researched and are somewhat comforting but I am stuck and torn still..

Aug 4th, 2014 9:14pm

Thanks for the book recommendation. I read it this weekend. Yes, it sounds like my life, too. I'm not sure it will make sense to anyone who doesn't live with a brain injured spouse. Without that experience the wife might just seem crazy. But I think it does make us all a little crazy.

Your previous posts all seemed to be so positive and in many ways that discouraged me because I can't seem to see it all in that positive light. I kept wondering if I was just too selfish, wanting more from life. So it was refreshing to see you highlight the other side, the long gray corridor of disheartening days. No one talks aloud about leaving and what that means, if it is necessarily the wrong choice.

Jul 27th, 2014 4:49pm

I have always wanted to write a book telling the truth about living with someone who has a severe TBI. You live day by day, never knowing what problem you have to solve, but there will always be one. Wondering if it would have been better if he had  died. Then dropping into a pit of quilt for even thinking that way.

Jul 25th, 2014 10:30pm

I've read this book, too, and agree with Rosemary's review. It's a powerful look at brain injury from the inside of the family who experiences it, and it describes how all the trauma and unwanted changes can play out. Brain injury doesn't happen only to the person who sustains one; it happens to the whole family, and beyond. It's  sad that we don't yet as a society realize this and take action to help the families, too. 

Jul 25th, 2014 3:43pm

this feels like it could be good to look at our injury's from the outside in, hope they sell it over here in mother England and if not i hope i can order a copy and have it posted out to me

Jul 25th, 2014 4:01am

Rosemary, I have always enjoyed your columns, but I had a felt a bit intimidated by how well you seem to have come through it all. I should have known better than to assume that it was any easier for you. This quote you selected shows it was, and perhaps still is, very hard for you, too as it is for all of us.

Thank you for sharing your insights.

Jul 24th, 2014 9:28pm

I am THANKFUL for this site.  I am able to relate with others in the same boat.  To often unable to express what this real world is like.

Jul 24th, 2014 11:33am


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