You can tell a lot about a person just by looking at them, but looks only go so far. Someone meeting me for the first time, for example, would think that I’m just a pretty average human being. I look average, for the most part, I act like a garden variety human being. I sound average when I speak, unless it’s one of those “overtired, my TBI stole my ability to speak,” moments. Yup, just an average guy living an average life.
But like so many others living with a traumatic brain injury, my challenges go way beyond skin-deep. Spend a bit more time with me, and you’ll learn that I have challenges. Those who spend a meaningful amount of time with me know well that I am compromised.
It’s been 3,882 days since my life changed forever. In those 3,882 days, I've learned a lot about life, about people, and about myself.
Now in my second decade as a brain injury survivor, it’s quite easy to tell you the post-injury challenge that makes my life more difficult. While I only feel a hint of shame in admitting it, I have no meaningful memory. I’m not talking about the type of memory lapses that those who are not neuro-compromised face. Everyone occasionally forgets where they left their keys. Many forget important dates like birthdays and anniversaries. Life is more complicated these days than ever before. It’s all too easy to forget.
But in my case, the memory losses go much deeper. Here’s where it gets awkward and uncomfortable – akin to shedding all filters and sharing the often harsh reality of my ongoing struggles.
I regularly forget the day of the week, often many times in the same day. If we met for the first time, don’t expect me to remember your name. It may take four of five meetings for me to remember. The current month? Don’t even get me started on that one.
Here’s a TBI mind-twist: Looking forward to a holiday that just passed. All but forgetting that it’s already in the rearview mirror. “How does that work?” You might be asking.
Walking through our local Target, I might see some Easter decorations. All of a sudden, I get full-on excited that Easter is coming soon. I think back to Easters from the past with happy memories, wonder what I’m going to do to celebrate Easter this year, think about the meal that Sarah and I are going to prepare, and who will be invited to our home.
The excitement is almost palpable until I realize that Easter has already passed us by. Then the mental games and torture start. How come I can’t remember what we did this past Easter? Why can’t I remember any of the details of the day? How come I can’t tell you if we even did anything? At this point, my self-esteem crumbles and the negative narrative begins telling me that my life is just not worthwhile, and that I’ll never amount to anything, that I am doomed to live with unfathomable challenges, and that I am essentially screwed.
When my thinking has dissolved to this low, I lose all ability to see things with any meaningful degree of perspective. Hope fades and despair deepens. It’s pure and unadulterated mental torture, a torture you’d never see if you met me.
But it’s not just Easter. For so many years since my 2010 injury, I’ve looked forward to Christmases already past. Thanksgivings that I hope will be meaningful, and other special days whose events fail to imprint on my damaged brain.
Conversations bring even more stress. To this day, before I open my mouth, very often that inner voice asks that dreaded question: “Did you already say what you are thinking or will this be the first time you’ve said that?” Before my injury, I was a conversationalist. Now I tend to think more and speak less, a lot less. Life is safer that way. I’m less likely to embarrass myself.
Sound like a life worth living? Most might think not, but the reality is that I’m a reasonably happy guy these days, and I live a reasonably happy life. I’ve found compensatory strategies, successfully executed, that have actually made me higher functioning in many areas than I was before my injury.
Let’s talk about solutions!
These days, my Google calendar is a critical part of what I call my “external memory.” Virtually every important date in my life is set in my calendar. Birthdays, anniversaries, other days that are meaningful to me, or those close to me, are set up in my calendar. Ironically, it’s been many years since I’ve missed wishing someone close to me a happy birthday or anniversary, prompting many to comment about what a good memory I have. I just smile.
I wear a smartwatch now with a single screen that tells me the day of the week, the month, and the year. Small data points to the uninjured, but a life-saver for me. When I look out my office window and wonder passively what month it is (like I just did), a quick look at my watch tells me. Like my calendar reminders, this may not mean much to most folks, but it gives me instant access to accurate information, spares my self-esteem, and lets me continue to move forward in my day.
While I may appear to be an obsessive photographer, there is more to it than that. These days, photos taken by my smartphone are date, time and location stamped and automatically uploaded to the Cloud, allowing me a visual linear journey through a past I so often forget.
Occasionally, I wonder if my memory has gotten any better since the early years after my injury. I was a tangled mess of confusion for several years. Perspective checks are hard for anyone – brain injury or not. My memory may or may not have improved over the years. Thinking too much about that one is a waste of cognitive resources. But what I can say with 100% certainly is that I have never been more adept at off-loading important information to external devices, knowing that I can trust the process. I will be reminded of my son’s birthday when it’s time. A dear friend’s wedding anniversary will not go unnoticed. I have faith in the process.
This is not a remedy to all my challenges. Conversationally, I’ve found no real solution – except to speak less. But it has helped me to craft a life that is worth living, and worthwhile.
Looking around the TBI survivor landscape, I have had an easier road than some, a harder road than others. That puts me in the center lane of the TBI highway - just an average TBI guy. And if sharing my own challenges helps you to realize that you are not alone, my own struggles have helped to lift humanity a bit higher. It is with this perspective that my own challenges can serve a greater good.
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Jane replied on Permalink
David, like so many others, your description resonates with me. I am 3 years after my TBI and well meaning friends are happy to congratulate me on my "full recovery." At this point, I am still trying to develop my compensatory strategies. Like King said in the comments, there is a sense of shame because I never needed the post-it notes and the reminders before.
A good resource for strategies may be others who are dealing with TBI. Are there any support groups online that people have found?
David, could you add something to watch saying what holiday is next (or past)?
Anonymous replied on Permalink
My TBI was back in 1984, just before Christmas. I was the only survivor in an auto accident that took my husband and 2 young children instantly to Heaven. Unfortunately I had zero rehabilitation because back then, in a rural area, my pupils were “Equal and reactive”— Supposedly no brain injury. It was years before I understood what was causing all my symptoms.
It’s sad to me that I cannot remember the holiday times of the recent past. So much of what you said resonates with me. I wrote a self-published book also, 3 years ago and God helped me get it written because I don’t recognize my own narrative. I only got through all of what happened to me, with the help and strengthening from Jesus, my Rock that never leaves.
Kathy replied on Permalink
What is the name of your book? Is it in large print?
C Terry Morgan replied on Permalink
I’m 21 years out and your story matches up with mine in many ways. In short here is what l do to help me. 1 calendar with different color markers for different things. Alarms to remind me to do things. Timers to tell when to stop. Post it notes are my wall decorations. The best way to remember things is write it on my hand. As far as big days l can’t remember them either. I’m like you to look at me you would never know my brain is scrambled! I do feel blessed that l can do most things on my own if l have what order, time, where, what, and if all possible a picture of where lm going or food etc l need to get. There is hope and l hang on to survivors story to help me. Thanks for being real.
Caroline McBride replied on Permalink
Thank you for your comments. My memory is also poor as the result of a TBI. After the hospital, I had to come up with memory strategies on my own. My second college degree was in Communicative Disorders. I had hoped to be a speech pathologist but my grades were not high enough. In school, I learned about memory disorders after a TBI in a couple of paragraphs in one of my textbooks. It was barely mentioned. How sad.
King Wiemann replied on Permalink
Thank you so much for your clear writing. I identify 100% with your symptoms and your solutions. Over the previous 18 months, I have had to create and adopt many of the same techniques - but with a sense of guilt, a sense of shame - because I never needed to do these things before - and I wish I didn't have to do them now. Your summary: "craft a life worth living" is where I am now - making a new life, adapting to what I have now instead of regretting what I no longer have.
Anonymous replied on Permalink
I was reading and wondering how do you write much, do you get tired and does it take you awhile to do the whole writing work. Today...my tbi is now 13 yrs old and I took a volunteer job... and I panicked because they said I would have to call 911 if something happens. I thought am I capable of handling all the questions? Hmmm I think your article is great and wonderful and I know what it is like to know the past thinking it is present but was the past. I wrote a book and had it self published and I read it from time to time thinking, who is the person who wrote it? Doesn't sound like me at all.. lol!
Anonymous replied on Permalink
I’m a tbi survivor with hydrocephalus I can relate to all of your statements I have a condition called hydrocephalus I’m in my 50s just had parti of my shunt replaced