How Transparent is Too Transparent?

How Transparent Is Too Transparent?

Living as a brain injury survivor sometimes takes a bit of finesse. Like most life lessons, I learned this the hard way. During the first year after my cycling accident, well-wishers asked me how my recovery was progressing. For quite a while, I looked like I had been run over by a car. The fact that I was run over by a car only added to this.

Early on, I had no real understanding of disinhibition, nor did I have any way of knowing that a certain societal stigma still exists regarding traumatic brain injury.

When asked how I was faring, my reply was pretty consistent: “Other than my traumatic brain injury kicking my backside, I’m doing okay.”

Well-wishers would look at me a bit longer than one would expect, and some would actually take a step backwards as if they might catch my brain injury. Most conversations ended abruptly and awkwardly.

Simply put, I didn’t know what I didn’t know.

These days, many years later, I am both more reserved and more careful about how I share when I meet someone face-to-face. If they are part of my new TBI family and ask how I am, I am very straightforward. We owe that to each other in the brain injury community.

If, however, someone outside of the TBI realm asks, I am more inclined to change up my reply. Instead of using the term, traumatic brain injury, I most always reply with something a bit less inclined to distance people from me.

“Thanks for asking. I’m reasonably well, but do have some ongoing concussion-related challenges.”

This approach allows me to be true to my inner self and honest about my life, and all the while, others are less inclined to abruptly end a conversation. In fact, it’s become a door opener for more dialogue. These days, the media spotlight shines brightly on the concussion world. We need look no further than the NFL.

I feel like I have mastered the face-to-face challenges I used to confront when asked about my health. But it’s my written work that still often causes me angst. Like a human-sized pendulum, I swing back and forth about how much I should share. How transparent is too transparent?

My wife Sarah and I were talking about this during a recent conversation. She is as reserved as I am open. “David, you’ll share just about anything on Facebook,” she said with a bit of a sigh. And like she often does, she got me thinking. I am going to meet her halfway on this one. When it comes to the challenges I face as a brain injury survivor, there is almost nothing off-limits. I’ve openly shared about tough topics – topics that many deal with, but no one wants to write about.

Days so hard that nothing short of oblivion looks like a solution? I say it’s quite okay to write about them. The endless frustration that those close to me face almost daily? If you’ve followed my work, you know I’ve written about it. Boxers or briefs? Never! This has nothing to do with my second life. See? I do have my limits.

A few weeks ago, I posted a short piece about an abysmally tough day. There is documented science that shows that writing is cathartic and helps us to heal. When life gets overwhelmingly tough, I don’t jump to a bottle of Jack Daniels or something else that isn’t good for me. Rather, I jump to my keyboard and purge my soul. All too often, tears flow as freely as my words.

And ironically, the deeper the pain, the more others seem to relate and reply to it, knowing that they are not alone in their struggles, that someone else “gets it.”

After a painfully honest post, a post that left me second-guessing whether I was oversharing, two replies floored me.

“I am a professional who has worked with TBI for 20 years… Your post has educated me more than any class or conference I have ever attended.”

“You put into words all that I feel and experience but am unable to explain. Thank you.”

Someone who had made the decision to support the TBI community on a professional level came away with a deeper understanding of what life is like after a brain injury. And a fellow survivor knows that others understand her, and that others live with issues similar to her own.

I recently heard that the two most important days of your life are the day that you were born and the day that you realize your life’s true purpose. Over time, it’s become clear that my life’s true purpose is to serve others who share my fate. And with every hard post I share, I help humanity to rise.

Am I too transparent in what I share? These days, I don’t think so, but I’d love to hear what you think. Come on, it’s your turn. Be transparent. You might just help someone.

Comments (15)

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You took the words right out of my mouth...
Thank you ❤

Hi david

i only recently began reading your blog after attending your seminar in Stamford

​we met briefly after the seminar when you signed your book for me.  I am a 9 month survivor of a stroke.    I look ok to most people as I was fortunate to have few visible deficits from the stroke.  I feel like a whiner when I tell people about fatigue and inability to focus.  I feel quite diminished from my pre-stroke days so how do you respond  I usually say I feel pretty well and I feel lucky all things considered

I know exactly what your saying. Nearly 30yrs post injury from moderate tbi with absolutely no follow-up after discharge.  my symptoms are only just being diagnosed! What could life of been like with the right support!? Im in my late 30s now and have been through the mill whilst undiagnosed. Now that Im more aware of my limitations life is starting to improve! Studying health science part time  hoping to go into employment as Palliative Care nurse. Its a relief to finally feel normal.

I am the mother of a son with TBI, and a daughter of a father who did not survive TBI so fair to say I have an inkling of what reality is like after the media, family and friends have deserted. I began to write, to try and get rid of some of the frustration when my neighbour convinced me to make my words public so it was back to the drawing board to modify my words! yet maintain transparency. I was blown away by the response and feedback from readers who thanked me for my honesty, shared their stories and others who were thus encouraged to keep on trying, to not accept all the negativity and to never ever give up.A psychologist wrote and said he was ashamed of his fellow professionals and welcomed my words, but better still how my words had taught him. And what can I say of the insurance company who came to the party after  my words were published . . . Please continue to write calling it as it is without the need to be right or wrong, then everyone wins. That some of your words, experiences may cause others embarrassment, tough. Even the title of my book caused issues for some, but 'You're a Dick, Mummy' were the first words my 21 year old son said to me when he learnt to speak so I cribbed them for the title. Against the odds, I now know brain injury more intimately, sustaining mTBI twelve months ago. And as I find bike riding more beneficial than walking to address my right side weakness my son wears a smile, ever hopeful that Mum might take bicycling to new levels. Not Likely! Son was a representative duathlete and cyclist before his accident and it was his love of sport that saw him determined to reach his goal of getting back on the bike, to survive and live again  when the medics predicted that should he survive he would never hold a hammer in his hand or ride a bike again. By sharing, by caring we help each other and inspire others. There are no spectators here, only folk who participate.

Thanks for this post. My experience mirrors yours so well that a friend shared it with me. I appreciate the resource you have created here.

This is a very helpful article. I'm relatively new to this TBI experience, (6 months in) and I keep noticing that I have overshared, but unsure of what I have said that has made the other person uncomfortable. Reading about it from another person's experience is very normalizing, so helpful. Thank you.

So many people with TBIs are unwilling or unable to share their ongoing challenges. Consequently, most people believe they and others with TBIs are back to "normal." Those newly facing TBI challenges and their families believe that they should also return to "normal" quickly because they don't know the true course of recovery. In the appropriate venues we all need to "come out of the closet" and talk realistically about what living with the consequences of TBI is really like. Its not terrible, but there are daily challenges.


As a fellow TBI survivor, your topic hit home. Almost 35 years post TBI, I can understand where you come from. It is a struggle dealing with your new condition. Forget about familiarizing people with the situation at hand. You'll just muddy the water deeper an ostracize faster people. A vicious circle it seems. But, in time, you learn to deal with the new you. Ten years, twenty, thirty, it is hard to say when the button of rejection turns into that button of learning an acceptance. When this pivot takes place is monumental for a TBI survivor. Henceforth, the journey takes on new are what you are because you are...inside has always been radiance...outside, now, transfers into a glowing radiance.

Hi David.  As the spouse of a TBI survivor (almost 5 years post), I can say that being open and honest is greatly appreciated.  There is so little out there in the way of information - REAL information - for survivors and their caregivers.  I'm always looking for information and perspectives from others who've been "in the trenches".  Keep doing what you're doing, please!

I enjoyed this article emensly. I am 9 mo post TBI and am working on those challenges with memory, speech and attention. I continue to make progress and its reading articles like this that help a lot. My TBI was caused by the 3eee encephalitis virus with severe swelling to my brain. Sometimes people don't understand brain injuries enough. Even though we look great on the outside we aren't ok on the inside. We all work very hard with our brains. Keep those great articles coming.

My classic reply when people ask how I am, I start with "I'm well, thank you. Most of my side-effects are minor, compared with many other brain injury survivors, but everyday continues to be a new day." If that person asks for more information I will continue. If they don't ask, that's fine because I did start that I had a brain injury. I will be as transparent as the conversations allows.  I don't wear my injury as a badge but I refuse to hide it.  Ric J.

I am NOT a survivor, but I live with one. I believe the comment about validation is quite true and can agree. Everything of yours I have read is spot on and I am glad someone had the courage to write it down and share it. It is always helpful and enlightening to read your work!

I lived so long with a brain injury I didn't know I had. I was miserable. Twenty-seven years later, when I found out that what was wrong with me had a name, I was overjoyed! It took another decade to learn what it meant to live with a TBI, a decade in which I also went back to school to study communication sciences and disorder. When I finished graduate school, I was so comfortable with the subject that I had to write a book about the history of my brain injury and the history of brain injury awareness. In my book, Not What I Expected: My Life with a Brian Injury (I Didn't Know I Had), I've told it all -- I blurted out all of the crazy brain injured things I have done. It was indeed a catharsis and I feel so much better! Maybe I told more than I should have, but I'm no longer squeamish about saying I live with residuals from brain injury. At last, I feel that my brain-injured life has a purpose, and that is to talk and write about brain injury so that professionals will gain insight, people with brain injury will see that they can live meaningfully again, and everyone will be more comfortable talking about their amazing brain.

I'm the spouse of the TBI survivor, and I agree with your point-of-view. I don't think it's "over sharing", I just think it's "sharing". People who don't live with it or around it can't possibly understand unless we tell them. I'm cautious to not overstep my boundaries since the injury is not mine, but I'm all for educating and shedding light on the injury. Not sharing the hard part is not doing the injury justice. Because it's everything but easy.

As I've shared with you personally David, no - I don't think anything you've shared is too transparent. Through my experience with TBI and my personal experience in another 'club' of sorts, I have learned that by openly sharing your experiences, your pain and your joy; it helps others to understand not just you, but others around them. Others can choose to keep things close to the chest and that's their choice but I'm willing to bet your transparency, as well as many others, has aided thousands (many of whom you will never hear from) by validating their feelings. Validation is a precious gift we can give others by always being open and honest.