To say that traumatic brain injury complicates relationships is an understatement of monumental proportion. Brain injury affects more than just the actual survivor. Husbands, wives, children and parents all feel its effects. Many friends may slowly fade away as life forever changes.
With what might be called a more "traditional injury," time passes and everyone involved moves on with their respective lives. Not so with a traumatic brain injury. The aftereffects can last a lifetime.
My own brain injury occurred just over four years ago when a teenage driver struck me while I was cycling on a mid-November day. As the years passed, I knew the collateral damage was high, but there are some things you just can't see coming.
My oldest two sons were in their mid-twenties when our lives changed forever. One was a web developer, the other looking to pursue a career in criminal justice. They were the types of kids that any parent would be proud of. Though much of what I read during the first couple of years after my accident talked about fractured friendships and families, I was quite sure my life would be different.
A bit over four years out, my naiveté shines bright. Both of my oldest boys are nearing thirty now. And both have made the decision to fade into the background of my life. One faded away in 2011; the other, a year or so after my injury.
Brain injury? Yeah, it's complicated. As I started the abysmally slow and painful crawl toward my new normal during my first year as a survivor, I heard the whispers.
"Dad is faking that brain injury stuff for attention," came the quiet voices that I was not supposed to hear. Internet research was done and I was labeled by several family members as having a mental disorder in which a person fakes illness to gain attention and sympathy.
In what amounts to a cruel twist of fate, these accusations came at a time that I was least able to advocate for myself. I was doing all I could to understand where my old life went. Barely having the internal resources to live my new life as a brain injury survivor, I did not have the ability to defend myself. The lack of my reply to accusations only fueled the rumors that my injury was indeed being faked.
As time passed, the absence of my sons became acute. The lack of return calls, the deleting of email and the non-responsiveness to text messages made it clear that they chose to believe the rumors.
Time passes, as it inevitably does, said the Winnie the Pooh narrator voice that so often describes the timeline of my life. Earlier this year, after many years of failed attempts, I surrendered my sons to the Universe. Oh, how I would love to share that this was a freeing experience, that my hours of prayer paid off and that a joyful reconciliation came to pass.
But they are still AWOL.
Last month I deleted my sons' numbers from my cell phone. It was painful and moved me to tears again. Just when I thought the river of tears had dried up, the waterworks started. I did not delete them for reasons you might expect. Daily, when I would use my phone, if my contact list happened to stop on an "S" or a "D," I'd again see my sons' names on my screen. And in seeing their names, the pain would often come rushing back with a vengeance. Little did I realize that the toughest part of my post-brain injury journey would have come to this, but such is the reality of life after brain injury.
Those who know me best, those who really know me, know that my default setting leans decidedly toward optimism and having a positive outlook. These two attributes have carried me far in this second life. So what type of positive take-away can come of this?
I've learned that family is not defined by shared DNA. There are people who are part of my new family who love me unconditionally. I am grateful to have many souls like this as part of my life. I cling to the old adage that says, "Where there's life, there's hope." In spite of how things have unfolded over the last few years, my not-so-secret hope is that my sons will eventually come back into my life.
Brain injury is complicated. More complicated than anything I've ever experienced. But the Beatles were right. I'll get by with a little help from my friends.
Comments (29)
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Dave replied on Permalink
Well, that saying, misery loves company.....as many others have shared you're NOT alone in your situation. My wife has TBI and suffered a nervous break down 6 days before she fell backward hitting the back of her head on carpeted cement floor 6 months ago. My son, his fiancee and my daughter are all struggling with feeling that she's faking it all. I wouldn't wish TBI alone on my/our worst enemy let alone the disbelief of family members. I pray acceptance and re-connection for all of us in this situation. GOD BLESS !!!
Anonymous replied on Permalink
Anonymous replied on Permalink
I so understand. I am going through the same thing and it hurts the most when it from the ones you love.
Anonymous replied on Permalink
David it takes great strength to face such profound pain and not only write about it but share it publicly. I hope your sons eventually learn enough about TBI to realize you were never faking anything, and that - perhaps from reading your blog - there will be a positive reunion.
Anonymous replied on Permalink
David- I am speaking on this very subject at the Encephalitis Global Faces Conference in March. May I have your permission to use your opening two paragraphs? Patricia
Anonymous replied on Permalink
It has been good for me to see this and read all the following comments.I appreciate your sharing this. Like you and many of those sharing on this blog, I have had a TBI and have been recuperating for three years. I had a craniectomy and no left skull for three months. I have worked my way back from total immobilization and seizures to a fairly normal life. I thought. However I have noticed friends dropping off and waited and waited. I have thought I was not that much different than before but about a month ago my husband informed me that I was fooling myself and that I am a different now. It saddens me. Like David I have experienced the disbelief of what is going on in my changed world. I thought I would get over this. Sometimes my daughters treat me like a child. I don't know what to do to fix this predicament. I have found though it is so easy to draw near to God in my heart, so that is what I do. I feel like He walks near to me when I need Him. I like to enjoy the moment in times where I feel defective or less than. When I start to feel like my brain is overstimulated I get out of the area and stay till I have calmed down. I can't fight because I don't have the energy. I walk a lot and take photographs. I try to focus on the joy I can find in the ordinariness of life around me. Mostly I am happy and mostly I still think I feel ordinary, but I must say I have so missed friends who just walked away.
Anonymous replied on Permalink
My husband had a brain injury 7 1/2 years ago. And relationships change for the caregivers as well. For the most part I think individuals do not know how to handle the new situation. If it had not been for my relentless quest for finding information I would be just as ignorant as the average person. Even those that I know love me and my family very much do not understand, nor can the comprehend the changes that occur as a result of a TBI. It changes EVERYTHING. I know that I will always value those that have stood by us as we work through the changes and the challenges we endure on an ongoing basis. I have learned that I am stronger than I ever thought I could be. And it has opened my eyes and my heart to all the individuals that have been affected by this. Especially those that have served our country for each and every one of us.
I can tell you that we have highs and lows. I used to think at some point it would all come to an end. But have learned it is an ongoing journey with new challenges as we move along the spectrum. I used to be hurt by the remarks made by individuals, who actually meant well, that showed just how ignorant they were about TBI. I have been told that I enable my husband, by a very well meaning individual. And for a long time I thought maybe I was guilty. But living this life is not comparable to anything comprehensible to anyone else. You could never understand until you have been there and done it. Good luck to all. May we always have each other.
Anonymous replied on Permalink
This is hard to read since TBI's are all I know and because I am a people personI make friends easily but they don't always stay. Life is busy for us too and I pray for you. My blog is LivingThePost-ItLife see g+ My testimont link.
Anonymous replied on Permalink
No one can uderstand what its like living with a traumatic brain injury unless they to live with tbi! Jamie tbi 4/14/02
Anonymous replied on Permalink
Thank you for sharing - honesty is all I have and post brain injury is a lonely place but the people I now share my life with are real and the relationships I do have are strong.
Outsiders are just afraid, I know I would have been no different as my old self - I was an outgoing successful career orientated woman and parent - that old life was so full of bullshitters, I feel privaliged to be free of those old chains.
These new challenges are the biggest I have ever had and this new path on my journey, although off-road are inspiring in new ways ! I just have to find new ways in which to succeed,
peace be with you x
Anonymous replied on Permalink
I'm the only one in my son's life that has stood by him no matter how bad he treats me it's affected my relationship with my son's father my family and friends and now it's affecting my new relationship with my new husband .. they also think my son is putting it all on to get what he wants .. my son damaged right frontal lobe and has a severe brain injury ..
Anonymous replied on Permalink
Hi David, my name is Steve. I've just 'stumbled' over your writing on Brainline. Thank you for writing.
It's great you're able to write your thoughts so clearly and thoughtfully. I don't usually write anything, however I can relate some. I also have an mtbi from an auto accident and just had a small thought.
I hope and pray your boys "come around" at some point. May I encourage you to NOT remove their names from your phone's address book. Just because they have "moved on" from you doesn't mean you have moved on from them.
In my phone, I put a "z-" (the letter 'z' and a dash) in front of names I want to keep - but really don't want to 'see' every day. They go to the end of the list but they're still there.
I can't fully relate to the pain (frustration? sadness?) you're going through concerning your family, so I hesitate to write, however I CAN relate to your love for your children and the hope they some day come into a better understanding of the life you now live. And when that day comes, you'll want their numbers in your phone.
-Steve Taylor
Anonymous replied on Permalink
You write so well, I wish your sons would read it
Anonymous replied on Permalink
My heart aches for you, David, after reading of the loss of your previous closeness with your sons. I hope the increasing public awareness of the long-term affects of TBI will help them understand that you are not less of a person, just different from the Dad they grew up with. I commend you for moving on with your life. Falling into bitterness or anger could have been so easy.
Doris Sanders, TBI Survivor
Anonymous replied on Permalink
I'm so sorry David! My husband has a TBI (May 2011) and we are dealing with the same thing. Seeing friends and family disappear has been very hard. Some just can't accept the changes. I just pray things will get better, I will certainly be praying for you and your sons. Much love to you!
Anonymous replied on Permalink
I have hope for you too. Sometimes (trite) these things take time...but, although it is unjust, the younger members of our families simply can not perceive that a walking, talking brain injury survivor simply is not the same as they were before the accident...they have absolutely no conception of the "hidden" injuries. However, in time, some come to a better understanding. My sons have been extremely supportive of my tbi husband - yet still often expect the impossible. I love them all sincerely, as I see you do your sons. I feel for you. You are correct, though, ... people dont have to share DNA to be "family" . Best wishes from me to you.
Anonymous replied on Permalink
Just terribly sad for all involved. In the meantime, we got ya brother-friend. The Universe is full of unanticipated surprises. Keep holding on to your optimism through the tears.♡
Anonymous replied on Permalink
Dear David,
Reading your article brought me much sadness. You are absolutely right that brain injury challenges relationships. I am so sorry that your sons have gone AWOL, but I am also sad that you seem to have shut the door on them. I know this decision was a difficult one and I imagine sharing it here was perhaps healing, but also very difficult. In an attempt to not come across rude, or self righteous, I would encourage you to keep the possibility of a relationship open with them. I was wondering if you have considered how much change and challenge they have experienced with your injury, perhaps reflect on this that they are likely grieving from the 'loss" of their dad. I have so much running through my head. Brain injury is so complicated. My partner suffered his injury almost 9 years ago, yet it often seems like yesterday. I have often grieved for him, I have grieved for our "lost" relationships and I have often watched with feelings of envy of how easy it is for our friends lives to move forward while it seems like we take two steps back for every one forward. in the end we are still going, there were times I felt our friends and family didn't understand, they may not have, but I also didn't always understand what they were experiencing. I hope that you will somehow leave the door open for your family to make an entrance back into your life if the opportunity ever presents. I often follow the brain injury blogs, I don't often comment. I remember reading a post of yours a year or two back, I remember thinking, this guy is so fresh out, he needs more time, so much more is going to happen (positive) keep living. You don't need to be such a hero to brain injury. I hope these words don't come across as hurtful, that is not my intention. Thank you for writing this blog.
With gratitude,
Jamie
Anonymous replied on Permalink
This was such a good read. I have experienced many of the things he talked about! I got a brain injury in 08'. I was the passenger in a car accident
Anonymous replied on Permalink
After TBI, many things change. More importantly our relationships alter, due to lack of understanding the complications of a TBI. TBI is not mental illness, not a dangerous disorder, but a life altering injury. TBI is a disorder that people cannot see, and people are not always kind.
You must look deep within yourself and summons the understanding you miraculously have, in great part, due to your disorder. You possess far more insight than you realize. Please gather your insight, understanding of others, and shed some compassion to those who possess less than you. You are a miracle,...don't forget that!
Your sons may/may not come around to understanding what you have experienced. Somehow, I believe they eventually will. Take comfort in that. Best wishes
Anonymous replied on Permalink
I can relate. My 18 yo daughter Rachel has ignored me since 2007, when I "abandoned" her to her grandparents' home in same city (dad was in prison-unrelated to me) after nearly being killed by ex-boyfriend. I lost RN career, vehicles, all home possessions to landlord, well health, and kids, and was homeless 2 years prior to SSDI approval. Now I have epilepsy, daily pain, TBI, PTSD.
Anonymous replied on Permalink
God Bless you
Anonymous replied on Permalink
Wow! Another heart-felt, wonderfully written piece. A tear exited my left eye without my permission. Thank you. And I am sorry for your losses while ecstatic at your gains.
Anonymous replied on Permalink
This is a very touching article. I appreciate the author sharing it. It opens my eyes up to my own relationship with my father who suffered from a brain aneurysm in '99. I had been a bit distant maybe selfish once. But more recently I've been a bigger part of his life and so have my 2 sons. This article brings awareness to those that read it, that things do change. The person suffering from the brain injury has changed, for good. People often don't understand brain injuries. They can't see the damage on the outside so they forget what happened or is happening on this inside.
Anonymous replied on Permalink
Wow, I've been experiencing similar issues but also blessed with new people in my life since the injury. I have released my children to the universe as well; we are still in contact just not like we used to be. It can hurt hearing what your own family says but I am finally dealing with it directly. It's ok if they don't believe in TBI they are fortunate they don't have it. Congrats on accepting what is and moving forward.
Anonymous replied on Permalink
and this man & his writings saved this TBI's life! It is hard on all of us, I was a caregiver before I became one of the group, so I know the affects from both sides...it is painful but, the rewards & truths have far outweighed the negatives...
Anonymous replied on Permalink
Well written and I totally understand and live it as well. Thank you.
Anonymous replied on Permalink
Oh David, I am so sorry. I can understand why this was so hard for you to write. But, I thank you for sharing it. I hope beyond hope that your children do come back into your life.
Anonymous replied on Permalink
Hey!! I can totally relate to you!! I have a TBI as well.. It has been 8 1/2 years for me and I still deal with everyday issues.. My mom is my best friend and as of right now *and since my accident* she is probably the person than can almost completely understand me!! Of course she can't 100%, only because she doesn't have a brain injury, but she tries and that's what matters!! As for your sons, I am so sorry!! I could never imagine any of my family walking out on me!! I am 25 right now and was 16 when I got into my car wreck.. I do understand people thinking you're faking stuff and what not, though.. When in all actuality you aren't, they just don't understand!! I've had so many friends walk out on me, but thankfully the ones that truly matter have stuck it through, trying to understand me and learn the new me!! :)
I'll just tell you this.. God has a plan for you, so don't give up!! Keep going and be thankful for the ones that are with you still!! Never take them for granted is something I have definitely learned!! Last, but not least, PRAY.. Talk to The Lord.. I've learned He might not answer your prayers right away or in the way that you'd like, but there is a reason and He has something better in plan for you!!
Thank you for posting this!! I'll be praying for you and your sons!!