Who Am I Now? Loss of Self after TBI

Who Am I Now? Loss of Self After TBI

Loss of self is one of the biggest hurdles that TBI Survivors face


March, 2018


By Bill Herrin


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When a loved one dies, friends and family bear the brunt of the loss. There are rituals for their grief and mourning. As they go on with their lives, they hope and often expect that the pain will fade with time. They are often told, “Give yourself time” or “Don’t make any major decisions now” and “It will get easier.” They are expected to feel sad, upset, and even angry after a death. But they are also expected to move on with their lives, no matter how difficult or painful it is.

Everything Has Changed

Loss of Self is a huge hurdle to overcome

But when a person has a traumatic brain injury, their family faces new and different challenges. They have lost many of the things that they knew and loved about the Survivor. Their relationship with the Survivor has changed and so have their expectations and dreams for the future. While the physical, cognitive, behavioral, social and  even financial changes may be most evident, there’s something else that’s harder to define.  That’s the loss of self that the Survivor of a TBI faces. “Who am I now?” is the critical question. “What gives meaning to my life now?” Then there is the uncertainty of whether it’s even possible to reclaim your old life when so much has changed? While most everyone tries to overcome loss of self, some succeed…some cannot.


Rebuilding is tough

 With that said, this article is not meant to be discouraging. Rather it’s about encouragement and hope as you face the loss of your sense of self and explore the process of building a new identity or self.  It’s incredibly painful to realize that resurrecting your “old life” may be a dream that can’t be fulfilled. Letting go of the past is hard. If only it was as simple as hitting a “re-start” button after TBI as you do to reboot your computer.  This Brain Injury Journey Bulletin is about looking forward and living at peace with who you are now. Reinventing your new life post-TBI is a challenge filled with both disappointments and achievements. There is no prescription, timetable, or road map to guide you through loss of self. The most helpful advice and guidance may come from people who have made this journey from survival to living a full life again. Let them be your mentors.


Necessity is the Mother of Reinvention

Strive to achieve your new normal

Hilary Zayed, who survived her brain injury, knows how difficult finding your new self can be. Her story is one of a huge transition described in her book, Reinventing Oneself After Loss.  Her artwork became a vehicle as she explored who she had become since her injury and how she rebuilt her identity, mourning her loss of self, and slowly regaining her new sense of self. Everyone will have different goals and different results. It’s not necessarily finding what makes you happy (though it helps), but more importantly, it’s finding what gives your life meaning now. This is the first step toward such a huge change. Finding a catalyst that drives you forward toward your reinvention can be incredibly motivating. Think about what makes you feel fulfilled, satisfied and meaningful and consider how that could become a part of your life after TBI.


Reinvention has to start somewhere

There is no set timetable or deadlines for reinventing your self. Survivor Garry Prowe’s tips on Living a Full Life after Brain Injury, admits that the initial steps to finding your new life may sound obvious – dealing with a roller coaster of emotions, feeling overwhelmed, angry, and depressed along with financial stress, unemployment, social isolation, and life style changes. But the greatest stress may be the uncertainty of the future as the path and extent of recovery is unpredictable. However, the road to reinvention has to start somewhere. It can take months and even years until you feel ready to work on reinventing your sense of self. Once you’ve been able to self-assess your strengths and capabilities, you’ll have a much better idea of your new direction as you begin the process of rebuilding. Prowe’s tip card is an inexpensive resource ($1) that outlines the many steps of recovery with contacts/resources/ideas for you. (You can sign up to receive a free catalog and tip card from Lash & Associates – and choose his tip card “Living a Full Life after Brain Injury at this link).


Different Paths for Different People

As life goes on, be encouraged by the many who have been in your shoes and traveled your journey. Jeff Sebell, also a survivor,  worked on “getting his power back” after his brain injury by focusing on regaining his self confidence, re-learning how to make decisions, and taking action steps toward living the life he wanted. Sounds simple, right? Of course it’s not at all, but Jeff shares an incredibly insightful peek into his “Modus Operandi” in this blog post, and also in his book “Learning to Live with Yourself after Brain Injury.” Jeff’s take on having a better life is based on how you choose to interpret the things that happen on a daily basis. This can make the difference between having a good day or a bad one. Just using this as a starting point can move your life in a more positive direction! We don’t have control over what happens to us, but we can interpret and judge its impact on us – and try to see the big picture. Jeff reminds us that TBI, and loss of self, doesn’t have to leave you powerless. Rather you can regain control over your life by working on positivity and determination. The results will follow. Your loss of self will soon become transforming…you’ll find that you’ve discovered your “new normal.”


There are no set rules for this rediscovery. We all have very different paths after a brain injury. Some of these paths may criss-cross and you may share common experiences and feelings with other survivors. However, navigating through the maze of traumatic brain injury requires self-determination, finding your strengths, setting some incremental goals for your life, and making the commitment to start working toward them.


Lash and Associates’ award winning blog site (on our website) offers hundreds of absolutely free blog articles by TBI experts and clinicians, TBI survivors, and family members that share insights as well. A well-rounded offering of insights from every possible angle – including more on the subject of today’s bulletin – loss of self. Lash & Associates is also a leading publisher of books, cognitive software, and more – all for the brain injury community. Just click the two award icons, or CLICK HERE to see our entire blog article collection!


4 responses to “Who Am I Now? Loss of Self after TBI”

  1. Stephanie Mae says:

    Muy daughter has this and we need something like this site.

  2. Diana says:

    I have a mild form of TBI. I find myself talking out loud to myself, often disparagingly. It seems random. Is this normal? It puts people off and is often construed as though I’m speaking to them. Any ideas as to how to stop?

  3. MartinMaw says:

    Hi All im noob here. Good article! Thx! Love your stories!

  4. Jo Boyd says:

    this article is GREAT!! I am a TBI Survivor, coming up 20 yrs… Recently I have found my new self and am well on the path to ‘becoming’ someone again! I wish I’d have had access to all this info re head injuries 19 years ago!!!
    Thank you for making it available!!!

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