It was a bit unexpected. But then again, so much of this TBI life, this life that I never expected to live today – so much of this is unexpected.
An email from my Brainline editor caught me a bit off guard. “I feel like the TBI community sees you as a role model, someone very high functioning,” she shared. “What do you think got you where you are?”
Over the years, I have worked with many editors. Many simply rubber-stamp my work, no thought, a cursory review and nothing more. Not so with my Brainline editor. Over the time we have worked together, she has pushed me as a writer, and my work is better for it.
Her comments have been churning around for a couple of days now. And as happens when I simply let time pass, clarity comes.
In part, I agree with her. I have come a long way since 2010 and have significantly exceeded the predicted medical outcomes. But that part about being a role model? We’ll save that for someone else.
Some things you can’t candy coat. In fact, the shattering of my verbal (and at times emotional) filter means that I am candid, transparent and forthright in ways never possible before my brain injury.
How do I think I got to where I am today? Frankly, I work my you-know-what off most every day. Recovery from a TBI is not a spectator sport. Almost from day one, my core focus, the most important thing in my life, has been to push myself harder than I ever have before. Anyone who lives daily with a brain injury knows that recovery takes work!
So, specifically, what have I done?
I steadfastly believe that a healthy body is necessary to speed brain injury recovery. I was an endurance athlete long before my injury. In fact, it was while I was out on what was supposed to be a thirty-mile bike ride that a teenage driver t-boned me and punched my TBI club membership card. There is a bit of an irony in that the same activity that was part of my injury has become such a critical part of my recovery.
My daily goal is 90 minutes of hard cardio. I am one of the lucky ones as I have been back on a bike for many years. PTSD slowed me for a bit, and my routes today are more rural than ever, but I ride most every day that the sun shines – and many that it does not. Days when the weather doesn’t cooperate, I jump on a stationary bike for my cardio. I always remember that every brain injury is different, so is every recovery. My intent is to share what I do.
A member of the medical community shared with me many years ago that there is a direct correlation with daily exercise and the speed of TBI recovery. Yes, I can cycle twenty-five miles every day. But even small changes can make a big difference. Things like parking a few spaces farther away from the door at your local grocery store mean just a few more steps. A few more steps taken over a long period of time add up to extra miles walked. If you are not capable of my regime, there are still things that you can do. Don’t kid yourself for a moment.
Let’s keep it rolling, shall we?
Recovery is as much an “inside job” as it is on the outside. Like so many others, my circle of friends got a lot smaller after my injury. Friends vanished as quickly as a late April snowfall here in New Hampshire. I hold no ill will, no resentments. We all make choices that seem to be the best at the time. These days, I only surround myself with those who support me and love me unconditionally. They may not know it, but they lift me higher and force me to be the best I can be. More candor here: there are indeed toxic relationships, souls who are not in my best interest to be around. By carefully cultivating an inner circle like this, I am better able to just “be me” without pressure and expectation. I try to create a life where every day is a sanctuary. Some days I succeed, some days I don’t. That just makes me human.
There is a saying that I heard many years before my injury. “You become like those you associate with.” It’s akin to that old saw that suggests that you choose your friends wisely. I aggressively seek out those who are overcomers, those who persevere, and those who beat the odds. I watch and learn from them. They are my source of true inspiration and let me know that the biggest limitations are the ones that I place upon myself. They have taught me to soar as a survivor – not by beating what I got, but by learning to coexist with my brain injury.
Perhaps the biggest game-changer is that I now seek out others who share my fate. A single lion stands out in a herd of zebras. By “herding” with other TBI survivors, I am part of a community of those who “get it” about life with a brain injury. We are all zebras together, and none of us stand out.
Every month, my wife Sarah and I attend at least one face-to-face support group. Just being in the presence of my herd brings me a degree of peace I find nowhere else. We speak the same language; we have the same challenges, and we support each in ways that are tough to explain. We are very much like family – without the shared DNA.
The timeline of brain injury recovery continues to amaze me. It is nothing short of epic. I’ve continued to see real and tangible gains, even in year six. But as time passes, I see more clearly my limitations as well. I have been slow to accept that I will never get back to where I was. Such is the pace and pain of ambiguous loss. I now live a one-day-at-a-time life. I embrace my good days as a gift. And like most anyone with a heartbeat and a TBI, I still have very tough TBI days. But I’ve learned to remind myself that I have made it through every tough day.
On the hardest days, I batten down the emotional hatches, set my expectations to a more realistic level and simply ride it out – knowing that tomorrow will be better!