Struggling with Belonging After Brain Injury: Where Do I Fit In?

Graphic representation of a white figurine standing in front of a disabled wheelchair symbol in black

Next month will mark the eleventh anniversary of my traumatic brain injury. Like I often do during the time leading up to my TBI anniversary date, I find myself again trying to figure out where I belong. This has been a recurring theme for me for several years now. 

Except for those closest to me, almost no one knows of my daily struggles. Like so many other brain injury survivors, I appear to be okay. And while many know of my past history, many others think I am well beyond my brain injury challenges and struggles. Why wouldn’t they? From the outside, my life has all the hallmarks of someone uninjured. During the Monday through Friday work week, I do what most people my age do: I go to work. Being self-employed has its advantages, but I still suit up and show up at my desk during the work week. 

Weekends find me and my wife, Sarah, living life on life’s terms. Since the pandemic struck, our travels are mostly limited to New England adventures. I chronicle most of these by taking lots of photos and posting them to my personal Facebook page. My reasons are different than most. I do not need outside validation of life, nor do I believe in presenting a carefully curated social presence. By posting photos and experiences, I am moving memories to something more reliable than my still-damaged brain. My life’s events are now digitally dated and time-stamped. As significant memory problems still haunt me, this helps me to remember things that I would surely forget. It’s a compensatory strategy in its truest sense.

What those external to Sarah and me see are all the makings of a life that looks pretty normal. While in many respects it is, I still struggle a lot and find myself wondering again where I fit in. It’s complicated. There are times that life hums along uneventfully, leaving me thinking that it’s going to remain smooth sailing for the foreseeable future. 

Then I get slammed with a TBI reality check. They come in many forms. Moving along at what looks to be the pace of the uninjured for too long leads to an inevitable crash. My processing time slows down to a snail’s pace. Word finding comes back with a vengeance. Heavy brain fog makes the very act of thinking feel like walking through knee-deep mental Jell-O. 

It’s hellish, and a torture I wouldn’t wish on anyone. And man, oh man, it so messes with my self-esteem, leaving me feeling like a second-class human being. There is the vast population of the uninjured, and then there’s me—hobbling along through life with a mental limp. I feel “less than” those without an injury, but I’m never really at home in the brain injury community as so many others seem to have it so very much worse. Look at me—I work. How can I possibly be disabled?

Trying to again figure out where I belong, I recently asked Sarah a simple question. I asked her for a simple yes or no answer. She is my safe human and I trust her judgment more than any other living person.

“Am I disabled, yes or no?” I asked in another moment of feeling lost between two worlds. 

She looked at me for long enough to make me wonder how she was going to answer. 

“It’s not that simple,” she said, carefully choosing her words. “You do have disabilities.” 

Silence followed. This was not the answer that I wanted. In fact, I can’t tell you what I wanted. Maybe I wanted someone else—someone I trusted—to just tell me that I was disabled, or not. 

But in her mindful answer, the truth slowly revealed itself. It is not a black or white question. There are so many layers to unpack, even after almost 11 years. My own deeply personal struggle is that almost shamefully I must admit that I had the misconception that disabled people are less than capable than those fully abled. And in that erroneous seeing, I view myself as less than those who are uninjured. I told you it was complicated.

Recently, Elon Musk hit the news as he spoke openly about being on the autism spectrum. There is no denying that he has been immensely successful in his business endeavors, yet he still coexists with a neurological developmental disability. Having a disability has not impeded his ability to attain a degree of success that few will ever see. On a smaller, more human scale, there are thousands of others who live with disabilities who have achieved success. 

It’s important to note that I do not define success as it relates to the size of a bank account or even the size of a rocket ship. Success, to me, can be best defined as being comfortable with one’s current situation, having a sense of purpose in today’s troubled world, and having a small but crucial circle of trusted friends and family who love you unconditionally—disabled or not. 

As I think this through, by my own definition, I am successful. I am successful despite, and at times because of, my own disabilities. But being successful and being disabled are two different things. 

But still, I circle back to the question that I revisit all too frequently: “Am I disabled?” In the final analysis, it really doesn’t matter. I have my challenges, you have yours. It makes us human and nothing more. Every moment I spend wondering where I am in this vast sea of humanity is a moment lost, a moment that I could be using differently. 

My hope is to get to the point where it no longer matters, to get to that place where I can just accept what is, not worry too much about what’s been lost, and live with gratitude in the moment. That’s my hope—but I’m just not there yet. 

Comments (7)

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Neuropsych student here trying to write a paper on the different ways TBI can manifest itself in someone's life. I was having trouble grasping the daily struggles or trials that would affect someone with TBI by only reading my textbook. I'm so grateful to have found your blog for insight. You have given me many more avenues to pursue.

I'll pray for your continued healing.

Thank you so very much for sharing your experiences. I'm a newbie with brain trauma (5 weeks ago since a burr hole surgery to alleviate a subdural hematoma after a bad fall off my bicycle--nothing as horrific as what you endured! Right now, I'm struggling with the "new me" after having been an endurance athlete and outdoor enthusiast for decades (I'm now 66). Your posts are so encouraging (and validating). So glad I came across this site. All the best to you.

Thanks for sharing your life adventures with all of us, David. It has been 12 years for me since I am lucky (I think) to have survived a major brain injury. Nine years ago when I turned 55, I had over 35 years on my job & it was time to retire. I didn’t really want to, but if I didn’t it may not have been my choice. So, like so many other brain injury survivors, I appear to be okay. Some think I’m lucky not to be working! While some know of my past history, many think I am beyond my brain injury challenges and struggles any nobody’s life but theirs matters. I hope that I show that I care how little things in the lives of those around me does mean something & I can through every day in my life without too many big struggles. I also hit the jackpot having a husband that continues to make a major positive difference in my life every day. Thanks again & I'll keep following you!

Wonderful article David. As a 31 yr TBI/coma survivor with many re-injuries under my belt, I just completed an amazing task that I used to do before my injury. I worked in a custom decorating workroom, but simple sewing was all that I've been able to do without problems. So when asked if I could, I was afraid to let her down & tried. I measured, figured out & made the new cushions, pillows, & all the fillers for my sister's couch! It all turned out beautiful! Why did I ever doubt? Working muscle memory came through! Persevere with faith that you can & you will!
Pat Strenk, Telford, PA

As someone who was diagnosed as having had a brain injury undiagnosed for over 50 years I want to stand up and cheer your descriptive and familiar words. While frustrated in looking back and sometimes depressed with not pursuing more reporting and writing, as I did as a small town newspaper journalist pre-diagnosis, I can relate and be inspired by your descriptive prose. There is a basis for self employment many brain injured persons could pursue if given opportunity. We all need to be a little more like you and recognize when opportunity is knocking and open the door. Bless you for sharing.
Brian Liebenstein - an Oregonian trending toward a commonwealth citizenship in Virginia.

David, I am 18 months into this recovery journey. I always find comfort in the things that you share. Thanks for the words.

David, this is one of your BEST columns I've read yet. I can relate to it 100% because of what I've had to go through since my husband's 3rd TBI, 6 years ago this month. Your wife Sarah is a trusted saint for you (as I suppose I am to my beloved husband, lol.), grateful you have her guiding spirit in your life. I do, respectfully, disagree with your closing words: when you feel you are wasting time trying to figure out where you are in this "sea of humanity", no, you are just trying to figure out the gifts you are bringing in to those spaces you DO fit in to (like to us, the other survivors, too.) I thank you for that gift. Perhaps you've already "gotten to the point where it no longer matters"?? Just saying. Blessings.