Life After Brain Injury — Watching Out for Rogue Waves

Life After Brain Injury — Watching Out for Rogue Waves

Occasionally, rogue waves make the news here in New England. For those unfamiliar with rogue waves, they are solitary creatures, spawned many miles offshore. They roll in catching unsuspecting sea-goers by surprise. Not your average wave, these enormous waves have been known to wash innocent souls out to sea. 

They come out of nowhere, crash our shorelines and recede as quickly as they rise. They are simply part of life for anyone with coastal roots.

And just like seaborne waves can wreak havoc, so can the emotional waves that come with living as a brain injury survivor. Like their aquatic counterparts, they originate out of nowhere, offer a bit of emotional catastrophic damage, then recede, sometimes as quickly as they came.

As the four-year anniversary of my traumatic brain injury nears, an emotional rogue wave has come close to swamping my boat. And like those caught unaware at the seashore, I have been caught completely off-guard.

The last couple of weeks, I have seen a huge resurgence in the overwhelming sense of loss and grief. Shared before, my hope was to be that one-in-a-million person who completely recovered from a brain injury. For so many years, my "plan" was to wake up one day, wipe the sleep out of my eyes, and like magic I would be who I was before my brain injury—whoever that was.

Ever so slowly, I am letting go of that secret hope. Sometimes, I am okay with the fact that this is my life and that I have to make the most of it. At other times, the dark thoughts come back. The rogue wave that has crashed over me tries to pull me under. 

During the first year of my new life as a survivor, a therapist saved my life.  She made me promise that if I ever considered looking for a “fast pass” to the finish line of life, I would call her first. "If I suspect that you are going to harm yourself, you know what I have to do," she said with the civility of a drill sergeant. At that point in my life, a locked psychiatric ward with no doorknobs and the removal of my shoelaces held no real appeal.

Feeling the weight of it all, this past week I Googled "brain injury and suicide." No, I have no intention of cashing in my chips. Rather, I was more than a bit curious about how many others died from traumatic brain injury long after the initial injury. The numbers were staggering.

My new life these days is defined by living close to complete transparency. I share more than most ever will, knowing that my own complete disclosure will help others to feel less alone and less isolated. As my wife Sarah has shared since life forever changed in November of 2010, "the curse will become a blessing."

The process of evolving from one person to another almost completely different person is often hard to describe to those who have not lived it. But it is a process. There will be good days, and there will be tough days. On the tough days, it helps to remind myself that I have a 100% track record of success in making it through the tougher days.

And that rogue emotional wave that came crashing down? Unlike solo beachcombers, I don't have to ride that treacherous wave alone.  In the years that have passed since my traumatic brain injury, I have met many others who have successfully navigated the unfamiliar waters of life after brain injury. Their support and success gives me hope that I can find a way, however haltingly, to live this second life I now have. 

If today is one of "those days," where the wave looks too big, too much to handle, too overwhelming, try to remember that you are not as alone as you might think. Others are there to help you find your way.

 

P.S. from David: “If suicide ever seems like a real option to you or a loved one, please seek the help of a medical professional IMMEDIATELY” 

Here are a few helpful links:
http://www.suicidepreventionlifeline.org
http://www.afsp.org

 

Comments (29)

Yes, lonely is the word. Having suffered more than a dozen brain insults over the course of my life; I have re-invented myself over and over again. During the last year or so, I have become increasingly more "disabled" on account of things out of my control. I have used this time that I have been idle to meditate and consider the person that I am now and how I came to this place in my life. As I've re-invented time and again; I missed understanding of some crucial elements of my earlier life experiences, how they affected me and how I responded. This is important because I've learned that I made mistaken assumptions that led to poor decisions. I did as well as i knew to do, but with insight, I could have made better choices. I have been doing the hard work of re-discovering my original self as best I can on my own. (I have had to do everything for myself for all these years.)
Now I have decided to find a therapist that can help me finish the job. My problem is in finding a compentent one that is experienced in dealing with TBI patients and end of life issues. I asked my physician for a referral and he wants me to see someone that does not fit this description. Typical. This is important to me and becoming more urgent as I deteriorate. Because I am also enduring a companion disease (that is even less understood than TBI) that is gradually taking away both my physical and mental abilities, I want to do this while I am still able to do so. There have been so many re-inventions. I am on a mission of discovery. I believe there are more answers to be found. I may or may not end up less lonely. I hope to at least have a better understanding of who I am, why, and perhaps how to be more content with that.

My wish is to stop the risk of traumatic brain injury by making roads safe. Promoting Public Transport and safe roads is the way to protect the next generation. Remember that 100 years ago there were not the deadly roads of today. Take care on roads and seek compensation for injuries. The automobile and vehicle insurance industries are making huge profits out of the suffering victims of TBI. Like any crime, road crime needs to be stopped by holding the guilty accountable. The answers are simple, safe driving (or better still no driving) will save lives. Join the campaign for better Public Transport.

GI am 65yrs old.  I share with you all the challenges of having to become a new person after brain injury.  I suffered my first concussion before I was 4yrs. old and have endured more than a dozen brain insults all told.

 At age 16, in a commercial kitchen accident, a pressure cooker exploded as I leaned over it. Not only was I burned badly, but I was knocked unconcious by the explosion and then thrown across the room, against a wall, and onto a concrete floor; hitting my head each repeatedly.  That was before anyone even thought to treat for concussion, only the burns.  I lost a year or more of my life in a fog, depressed, bewildered and searching for my lost self.  No one noticed.

I never really resolved all my issues but i forged ahead as best I could in life.  Then I had an auto accident and did a face plant into my stering wheel at age 27.  This was before air bags or even shoulder harnesess.  It was as brief concussion and I had no insurance.  You know the rest.  Another bout of depression and lonely struggle to find myself.

There were plenty more but the last two 'blows" really have been the harshest.  In 2002 I contracted Mennengeitis whic seemed to slow me down. Then a year later I hand a Right Brain CVA (stroke) and I am left handed. That really set me back.  I had to re-learn an awful lot while again sorting out who I was. To add insult  to injury; instead of contining to recover from my stroke, I have steadily deteriorated.  I likely also have something called Myalegic Encephalomyelitis (M.E.) which is a lousy companion disease to have.  

The good news in all this for everyone is that survival is doable.  I have done it with little or no help for almost 50 years.  I'm not telling you it has been easy. There are things I'd do differently.  Above all, I'd have taken better care of myself.  I'd have learned more about myself. I'd have worked harder to surround myself with people that would support me. I don't have very much of that.  

The key is balance.  Be content.  Best wishes to you all.   

I'm almost 22 years post-injury and suicide has been looking quite appealing lately.  So many people, especially medical persons, DO NOT understand this rogue wave business.  That just makes you feel even lonelier.  Throwing someone in a psych unit where their TBI needs are barely acknowledged or attended to doesn't help either.  What helps is true compassion, understanding from someone who hears what your heart is saying.  I've tried to explain to people how suicidal feelings are routine when you have a frontal lobe injury and most are just clueless.  They don't understand the "rogue wave" concept.  The medical world has a LONG WAYS to go before it really helps people with TBI.  Having a traumatic brain injury is the longest, loneliest struggle I have ever faced in my entire life.  Lately some people ganged up on me and now I am homeless.  Can you imagine being homeless when you are over 60?  I feel just lost, but I know I will have to give it the old college try to try have a life again.  Again. And again.  And again.............

This article is so true.  I've tried to explain to people how suicidal feelings are "routine" when you have a traumatic brain injury and most of the time they look at you like you are crazy or they are so confused by this description.  I'm almost 22 years post injury and I've been living with these "feelings" for a long time.  Sometimes having a traumatic brain injury is like having an aggressive form of cancer, except that people do not understand.  If you have cancer, everyone understands and is supportive, but with TBI, a lot of people are just clueless.  Some are afraid of you when they hear the words "traumatic brain injury", some think your IQ is at the low end of the spectrum and that they have to talk to you like a child. The loneliness is staggering at times.  Your soul craves to belong in the world like everyone else, to just BE ACCEPTED but it feels like you are an outsider, never fitting in anywhere.  People in my own family have said "when is she going to get over this."  My worker was so angry because she said how can you get over a permanent brain injury!  But unless people are brave enough to keep speaking out, the world will never learn what this very real medical condition is all about.

It's been nineteen years for me. Immediately after the new year 1998 rang in, my "bell" was rung also. I broke my left elbow and hip in the collision that gave me a contra-coup closed head injury. I was flown to the ICU, and was in the hospital for the next eight months, trauma center, inpatient and outpatient rehab. I was 22 at the time, and returned to the university in a wheelchair. I successfully graduated, two years later, but since then have been extremely disadvantaged in finding my place in society, and life in general. With an excellent support system, I have been able to thrive with the individual tasks of life, but have been unable to become independent, to find a career, or to create a relationship that lasts. Life is so lonely! I am alive, and I am grateful to be alive, but I still mourn the life that I was never able to create for myself. 

Get your son help immediately before he hurts you or himself. Years of feeling inadequate, not understanding what's wrong with you when you try but never feel good enough. It's also possible he's had a chemical imbalance of some kind that's not been discovered as he was a child. 

This posting is 100% right on.  I tore left frontal lobe due to car accident.  Now I struggle with everything including being normal.  I have a great wife who has stuck by my side through all my ups and downs.  My moods are plain and simply ridiculous.  I get something in my head and won’t stop until it’s done.  I lose all focus until task has been completed.  My agitation is no help either.  I get upset at the drop of a hat.  What sets me off one day doesn't the next.  I’m seeing a psychiatrics asking for direction.  I hate being on medication not to mention 5 pills.  If I want to keep my family in fact I will do what I got to do. I have full custody of my 9 year old and I love him.  I also have a step daughter.  I’m worried if his mom takes me to court will I lose custody.  Insights please? 

5/19/98 is when my new life started, on a back road ridding a bicycle down a dirt road. Road sign popped up out of no where and I hit it head on, flew over the handle bars of bike and head first into a dried creek bed hitting my head on the rocks below. I felt no pain at all ..... Lucky some would say but I think differently. I blacked out as soon as I hit the sign with only the wind whistling past my ears as I fell to my new reality. Came to standing on side of the road joking and apologizing to the people around me that were worried and concerned with the blood coming out of my head and left arm. Lady Luck was deffinitly on my side since I felt no pain and the nearest fire station had a mock ambulance run there .... Lol what a chance huh?. They rushed me to the hospital as I talked with the paramedics in the ambulance the whole way, everything seemed normal as can be other than my left arm was immobile and I was bleeding from my head. They rushed me in for a cat scan and found out that I fractured my skull and needed surgery immediately to remove the fragments that were in skull. First time out of hospital trying to sleep was horror, that's when my mind ran through what had happened and what was to come, one part I knew already through having it described to me n great detail and other part I still don't know. It will be 19 years next May and I am still not the person I was before and I know I never will be. Waves yes that is a great likeness of what I go through on a daily basis and I have come to realize that it's all in my head and try to use some Logic and self restraint to push through those surges of frustrating emotions, some mental made and others anger related. Recently I have been starting to deal with anxiety issues along with a year long fight with boarder line psychotic thoughts that luckily my Rational side of my being did NOT act on or I'd be in some serious shit right now. I was blessed I guess in a few ways this has happened, it proved that I am a strong person and it has opened some doors that were closed before, mostly mentality wise. Don't get me wrong it's a curse to I deal with everyday, My mind manifests so many things that aren't real and imagination runs wild with till I say NO and step away before It gets way to deep, drawing up emotions I do not want to feel. My wife of 14 years never knew me before the incident and knows me for who I am now, anger, temper, irrational thoughts and indecisiveness. I hope everyone with this blessing/ curse can find some solitude in any of this, I know every single one is different as is every person is different.            DJM

Thank you for this site. I've just cried my way through your post and all the others. Two years ago, my 11 year old grandson was in an ATV accident. EMTs and doctors on call that day kept saying they didn't know how he'd survived. The injuries to his face and head were severe, but it seemed like his brain was okay.

After several surgeries and finally home from the hospital, we waited for him to recover. It took months for the obvious injuries to heal, and though he's left with scars and a malformation on one side of his head they did. It was what we couldn't see - his brain that was really damaged. No doctor along the way even mentioned it. But it was soon clear my dear grandson was changed.

He has terrible problems with cognitive thinking and his emotions are a wild rollercoaster. We have pushed hard to get him help and are only now on the cusp of getting him real care. He's had some testing done and what we know is true shows on all the tests. 

He was the "smart" kid, the one the teachers loved and who could become anything he wanted. And now he's flunking in school. He can't tie his shoes or open his locker. And he's getting into trouble with the teachers and some students. He knows he's not the same and he;s depressed and suicidal. A doctor just put him on an antidepressant. That is the most help he's received.

I know you don't have the answers, but I just needed to pour this out. I'm so heartbroken over what has happened. And doing my best not to lose it as we fight to find help for my grandson.

Thank you for letting me share.

I am like so many before me. I had a large bleed, caused by Warfarin in my right frontal lobe and my wife, who runs a childcare Centre tells me I am now more like an ADHD child who lacks social control. I am told I am grumpy but mostly inappropriate (what a hateful word!) in my speech but how the hell am I supposed to know??? No one knows what I have unless I tell them then I feel like a fraud. I don't like who I now am but I can't help it - sorry . . .

Hello All,

I sustained a mild to moderate TBI at the end of 2007 in a head on motor accident. No one and I mean no one diagnosed a brain injury or even considered it until last year when I moved and changed doctors. I met with my new doctor and he said" you know you sustained a brain injury in your accident". That was relief in one sense as it explained to me why I was not the same person in many senses. I told my doctor that the words from the Pink Floyd track called "brain damage" summed my situation up,"there's someone in my head but its not me". The second doctor I saw was an ex Royal Marine who identified immediately that I had a brain injury. This was then confirmed by a neurosurgeon. I have now been on the waiting list to see a neuropsychological person here in the UK for over 7 months. As you will all know it is very difficult to help yourself. Well I wait in hope. And good luck to all.

Clem Jackson

Hello David

The item you posted gave me butterflies in my stomach.

My accident was October 2010 and my experiences so far with my Tbi seem identical .

Just saying hi really and thank you for your words as they will see me through today.

I am a member of Health Unlock Headway too - there are others with tidal waves there who i find comforting and informative.

Keep in touch

Kind regards

Jules

Stumbled across this tonight.  It is heart warming to hear other stories that sound so much like mine.  Not happy that we are all here but it is nice to know I am not alone.  My TBI happened 3.5 years ago with a motorcycle mishap.  It takes a long time but I think I am finally accepting that things are and will continue to be a lot different than before.  Still trying to conquer that it is ok and good things are still ahead especially with the symptoms hanging around.  Don't have many answers or suggestions - only to get a great doctor that addresses the cause not the symptoms because treating the cause really works.  My doctor said things like stress, depression and anxiety at the first visit and I thought it was crazy but I am living in a lot less pain now days thanks to the meds.  Everyone take care. 

Four months since I slipped on a icy hill side. It was on a playground where I worked. I was placing orange cones on the ice to keep kids away. I had a severe concussion 20 years ago. I only recall balance problems. This time balance, cognitive and depression have taken control of my life. I have moments where I can't go on. I'm constantly being told you will get back to normal. I have visited websites I couldn't believe existed. I've researched every drug I have in my medicine cabinet. I guess I'm blessed everything I have won't release me from my depression and bring sadness to my family. Thank you for sharing your struggle and how you are surviving. Maybe I should accept the different me. If I'm lucky I may get better if not I need to move forward.

Yes depression can be overwhelming. I recently read about the use of niacin in treating depression and anxiety. I tired it.  It works!!!! Seems to be helping my brain fog as well.

I empathize with you. I suffered my TBI almost 17 years ago, and it has been a roller coaster ride ever since. After reading "furiously happy" and seeing the connections that can be made through social and online posts, I have begun working on a blog to get and provide help to others working to deal with the long term effects of a TBI. Thank you for your blog! Mine will be at msbluestockings.com as soon as I get everything set up!

In February of 2013, a simple slip and fall on a steep icy hillside changed my family's life forever.  I was breaking the ice to make it safer for my wife.  In two days it will be may 3rd anniversary.  Your rogue waves analogy is perfect.  Having fought depression my entire life, I figured I could handle this too.  I was so wrong!  The darkness that came with the TBI was so overwhelming I tried to commit suicide several times, spent time in jail and a mental facility.  My wife and children were afraid of me.  I was too.  Through medication and homeopathic treatments I am finally coming out of the depression.  It's still there.  But I can deal with it better.  I am completely transparent with my family.  They are awesome and incredibly supportive.  I have always thought I'd wake up and this nightmare would be over.  It's not.  I relive the horrible things I done nearly every night.  The guilt is overwhelming.  But my family is helping me discover my new self.  I'm still not sure I want to continue this way.  But I'm fighting the good fight and hoping one day I will find peace with this malfunction.

You sir, are the face and voice of brain injury.

TBI Insider
http://www.tbiinsider.com/

I have been trying to deal or hide away from the issues my brain injury has caused me for some time now. These stories have for the first time made me realize that there are people out there exactly the same. My accident was 7 years ago now and for all this time I have lived off the fact how lucky I was to of survived my motorbike accident. I have convinced myself that I can live with my brain injury with no help. Its very hard to talk to people about it as no one can see the injury and no one understands. It has come to the point that my brain injury is affecting my relationship with my wife. Love this women so much and the lows in my life are affecting her so much. It's come to the point that my life feels it's falling apart and I'm really struggling at work. Your stories have helped so much thank you. Today is a new day and the day that I look for help for me and for all the people I love around me. Thank you

Wow, that is is exactly what my son is like, so sad. My son is 29 and was hit by a car while riding his bicycle in 1997. He has managed to stay out of jail (just barely). He too experiences these rogue waves and we do too, his family. He has an alcohol problem now and dabbles in abusing his current prescription  Aderal meds. which are suppose to help him focus on school work as he attends community college. It seems though that he can't just take whats prescribed, always more. I wish i could find a drug and alcohole specialis that is also trained in TBI. If anyone has a name or any advice for me I welcome it. I live in the Boston ,MA area. I'll keep you all in my heart.

Persevere, persevere, persevere... it is what it is because it is... few are called, but if it be so, there is a reason you were called... because you can handle all that a TBI entails. AC

It's 32 years for me and I still wake from dreams where I've recovered and then, the crash comes again. Every year around the anniversary of my accident I have experiences like you, but I love your name for them. I dread the nightmares, the anxiety of maybe remembering what I no longer want to know. I never looked up any stats, I don't want to die, I want to be whole. I can't be, but I have a life, a family, and love. I'm more alone than I need to be,but less than I could be, and I want to see my grandchildren grow up. That is a goal. That means survival. That means learning, still, how to do that, from whomever I can. Thank you for being a part of that.

This is a great way of describing some of the problems faced by people with brain injuries. Thank you for sharing.

You write for you and me. And I truly hope others like us who, like me came close to taking my own life (what's left of it). Please if you too are reading this after googling TBI and suicide do what Mike says. For you, for your loved ones and for me.

My husband of 24 years is a TBI survivor of 10 years, the TBI was from a fall, and we were overseas working in Japan, so things were even more stressful to deal with, with help from doctors and councilors at the Navy Military base hospital, his ever mounting symptoms were managed, but after 9 months of things not improving, we got transferred back stateside to Texas, to a rehab facility, one of the best around. He spent 18 months  there, and although he gained some skills back, his old self has never really came back, and every day is a struggle for him physically and emotionally, for us both. This story I have just read almost fits my husbands life to a tee, he struggles with anger, emotionally issues and cognitive issues that frustrate him to no end. there have been lots of days that both of us wish we were not here any more..... but  one can't bear to leave the other behind, so we go on for each other.

It is now 11 years for me and yes we do have to share our struggles and highlights. By sharing we help new survivors & their families. I also hope, that if all survivors share then perhaps traumatic brain injuries will stop being called the silent or invisible injury.

I too am nearing my 4 year anniversary, January 6. I've been feeling much like the"old" me then whoosh, I major migraine hit. Thank you for the reminder that no matter how "normal" you feel, you have a new normal now.

My son had TBI at 4 years of age from car accident.  He is now 24 and has been in and out of jail and I notice every time he has done something to get arrested is when he when he feels hurt.  It is like he forgets all consequences and wants to destroy himself.  Everyone else thinks he is a bad kid, but I know he struggles and loses control and I know it has to be because of TBI.  His logic and reasoning do not exist.  It is also an instant thing like you've described.  But by the time it passes the damage is already done.  I would like to believe there is some help out there for him that could change his life, but now he has such a bad record it seems never ending.  Jail is not a place for TBI and to me there should be legal representation to help protect him and get him moved into a center that specializes in working with TBI survivors.  He knows right from wrong, but sees none of this when he is hurting.