Life After a TBI: The Invisible Challenges of an Invisible Disability
By David A. Grant
It was not the place I ever expected to find myself, yet there I was – stuck in the men’s room with only a few minutes until I was supposed to speak.
So much of life these days, life as a brain injury survivor, is surreal.
When Brain Injury Canada reached out, asking me to present at the semi-annual conference in New Brunswick, getting stuck in a men’s room was the farthest thing from my mind. Then again, so was getting struck by a car that fated day so long ago. Some things, you just can’t see coming.
Being invisibly disabled comes with a unique set of challenges. If we met at our local market or crossed paths somehow, you might never know I am disabled. My socks match, most of the time. I am able to work. I pay a mortgage and a car payment. My wife Sarah and I have a happy and meaningful marriage. Our lawn is cut regularly and flowers sprout with reckless abandon in our yard. On the outside, all appears to be normal. But looks can be so deceiving.
Attendees at the recent Brain Injury Canada Conference saw my forward-facing side. There were lots of genuine smiles, new friends met, and old friendships revisited. The kindness and warmth of our Canadian hosts were superb. But I’d like to share a couple of events that came to pass outside of the public eye. Yes, it’s time to go backstage!
A couple of things happened that are so typical of the invisible challenges that I still face well into my seventh year as a brain injury survivor. Conference attendees saw neither, but today I’ll bare my soul and share them with you. Perhaps you’ll have a bit of a laugh. Perhaps you’ll learn a bit as well. Both are okay with me.
We arrived in Saint John after a seven-hour drive. Knowing that we would surely stop along the way, I cleverly hid our luggage under a checkered picnic cloth that never strays very far from my Jeep.
After checking in to our hotel, it was time to get settled in. If you travel, you know the drill: bring in your luggage, put things here and there, and do your best to make your home-away-from-home feel a bit like… well, home. I popped upon the rear tailgate and stood Jeep-side in complete panic.
OUR LUGGAGE WAS GONE!
Instant panic and adrenaline rushed through my veins. My jaw dropped open as I stared into the empty storage area. Sarah said later that her first thought was a panicked one after seeing the look of terror on my face: “David forgot the luggage.”
There I stood, looking at the checkered table cloth and nothing else. After an extraordinarily long ten seconds, I understood what had happened. I simply forgot that the luggage was under our picnic cloth.
In what amounts to one thread in the fabric of my post-brain-injury fabric life, if something is no longer in my sight, it simply doesn’t exist. I take, “Out of sight, out of mind,” to a whole new level.
At that moment in time, our luggage no longer existed – because I couldn’t see it. As my processing speed is a fraction of what it was, the light bulb over my head takes quite a while to illuminate. Sometimes it doesn’t illuminate at all.
I exhaled, pulled off the picnic cloth, and grabbed our luggage – much to our mutual relief. How I wished it stopped there, but the worst was yet to come.
There are some who erroneously think that the passage of time erases all challenges. They are wrong. Like others who have invisible disabilities, many of my challenges remain out of sight.
I’ll let you in on a secret. You and me only, okay?
Without exception, a few minutes before I speak at a conference, I always seek out a quiet place. My intent is always the same. I reach out to whatever the Power is behind the Universe to ask for help. Call it God, a Higher Power, or whatever your choice may be.
“Help me to be of service to You, to not be self-serving… and to help someone today.” It’s a simple request. This has been how I’ve done things since my first keynote presentation back in 2013. If it already works, why fix it?
Occasionally, the only quiet place I can find is the men’s room. Any port in the storm. Being an upscale facility, the Saint John Hilton is defined by clean lines and minimalist look. That look was carried into the inside of the men’s room. The walls were a medium gray and unadorned. The inside of the men’s room door was the EXACT color of the inside walls. By now, you might already know where I’m going with this.
With less than five minutes before my big presentation, I was completely unable to get out of the men’s room. Like a panther caged at the zoo, I did laps around the perimeter of my enclosure. With each lap, my panic doubled as the time I was expected to present ticked ever closer.
Three to four laps later, I saw the inside door handle, far too close in color to the rest of my unexpected cage. With sweet relief, the door swung open and I dashed back to the conference room. This was just a slightly different variation of our not-so-lost luggage as I was completely unable to discern that which I could not see.
Later, I shared my experience with Sarah. “You could have texted me,” she said, no smile on her face.
“HELP, I’M STUCK IN THE BATHROOM!”
Brain damaged or not, I still have some pride, you know.
Why share the embarrassing details of this? There are some who erroneously think that the passage of time erases all challenges. They are wrong. Like others who have invisible disabilities, many of my challenges remain out of sight. But just because they can’t be seen, it doesn’t mean they aren’t there.
If fate puts you at a conference where I am scheduled to speak, and I’m nowhere to be found in the last couple of minutes beforehand, please feel free to let me out of the men’s room. I’d really appreciate it.
David A. Grant is an internationally recognized brain injury advocate, freelance writer, keynote speaker and brain injury survivor based out of southern New Hampshire. He is the author of Metamorphosis, Surviving Brain Injury, a book that chronicles in the first year-and-a-half of his new life as a brain injury survivor. His second title, Slices of Life after Traumatic Brain Injury, was released in 2015. In 2016, David and his wife Sarah coproduced To Be Inspired: Stories of Courage and Hope after Brain Injury, a complication book of survivor stories. David is also a contributing author to Chicken Soup for the Soul, Recovering from Traumatic Brain Injuries and Chicken Soup for the Soul, Why I chose Gratitude.
As a survivor of a cycling accident in 2010, he shares his experience and hope through advocacy work including public speaking as well as his weekly brain injury blog. David is a regular contributing writer to Brainline.org, a PBS sponsored website. He is also a BIANH board member as well as a columnist in HEADWAY, the Brain Injury Association of New Hampshire’s periodic newsletter.
David is the founder of TBI Hope and Inspiration, a Facebook community with over 20,000 members including survivors, family members, and caregivers as well as members of the medical and professional community. In late 2016, David’s brain injury blog was awarded “Best Brain Injury Blog of 2016” by Healthline.org, a leading health information provider.
Together with his wife Sarah, they publish HOPE Magazine. HOPE Magazine is the world’s largest monthly magazine dedicated to brain injury of all kinds and is now ready in over thirty countries around the world. HOPE Magazine is a free, all-digital monthly magazine that features stories by brain injury survivors and those who love them.
When David is not in front of his keyboard, he can be found cycling the byways of southern New Hampshire.