It took me 50 minutes to run that 5K. But I spent fewer minutes on that pavement than I did days locked in that hospital learning how to walk again. So that counts for something.
Though it hasn't stopped me yet, the problem has persisted day in and day out - steadily in the background, at times in the foreground. Today marks a ten year struggle. And unless something shakes my tree again (and doesn't kill me this time), it's safe to bet this is going to be me from here on. For most of you, the basics are common knowledge. But, again for most of you, the details are unknown. I would like to let you in on my life's quiet constant.
I have a hard time determining which impairment is more challenging to cope with and manage, the physical or the cognitive. All time totaled, the physical issues are more obvious - as long as you're looking at me from the belly button down.
A recent example:
My limp that night was more pronounced than usual. I'd hurt it a few mornings before trying my hardest to do jumping jacks - incorrectly - as I tried to mimic the Insanity crowd. I am always going to have the limp. I’ve had it for a decade and it's not going anywhere. If you've walked with me for 10 yards you know it. What you might not know is that the limp doesn't result from pain or any acute discomfort. The problem is, unless I concentrate and try reeeaal hard, I don't have any control of my left foot. The subconscious heel-toe-push of a smooth stride went away right along with that chunk of memory I lost back in February of 2003. It's a thick, dead fish below my ankle, flopping around and thudding on the pavement, passively following by body's repeated almost-falling-forward movement. This results in sloppy landings and a quickly-torn-up left shoe. And an increased potential for injury. Normally my foot just flops around absent-mindedly with no discomfort; but I will have pain for days after I try to do something requiring a level of expertise and coordination higher than that of walking. (No surprise coordination isn't one of my strengths.) That jumping jack session might as well have been synchronized swimming in Bejing.
Cassie and I went to Cirque Du Soleil last December at the BOK Center in Tulsa. After we circled the block a couple times we found the entrance to the parking garage. The line of cars going in made it obvious the second time around. We paid $8 to get a little card so they wouldn't tow my car, and pulled inside. What didn't make sense to me was that each member of the car line ahead of us was following the leader slowly up the ramp and to the left. Are they blind? There's nothing but perfectly marked and empty parking spaces dead ahead. I broke the mold and took the road less traveled. Because it's easier this way. Less walking. The moment we pulled away from the line and into uncharted territory, we hear yelling. At us.
"Where is your Premium Parker Pass!?" the parking garage native shouted.
"Right here. I just bought it," as I waved our little card out the window at her. Not the answer she was looking for.
"No! This is premium parking."
I paused to put together my plan. I gotta fight for my right to park. "We are looking for the nearest handicap spot. There, right there against that wall over there."
Her eyebrows sink.
"Err, a... What?"
I can't guess why she said this, and why she said it this way. Offensive, her next line is also the best part of this little story: "Well, what are you, quadriplegic?"
I wanted to be offended, but I couldn't muster up the emotion. Was working too hard to keep in the laughs.
I hesitated for a second, raised and waved my working arms. "Nope. Just a basic handicap. Here's my sign." I showed my blue parking decal as she choked on her next words.
"Oh, uh, sssorry, I uh, well uh, park wherever you'd like."
And the land was ours!
Because of the insanity of the weekend before, I didn't even have to exaggerate the limp as I strutted by her car and towards the complete opposite-of-handicap, super-human performers in the building over yonder.
That's the body. The brain is different. For the most part, I know what to expect from my shaky ol' legs. A steady and predictable limp with little variation. I like knowing what I can't do. But you can't have a brain injury and expect the damaged mind to not be affected beyond ways imaginable. My imagination, memory, my line of thinking - the whole kit and caboodle is squirrelly and unpredictable.
Each brain is different. Duh. And each brain injury is different. Combine that with each background, experience, opinion, support system and personality of the persons injured and you'd need a graph as big and detailed as..uh... as something really big and detailed* to chart all the similarities and range of differences. (*Give me a break, I'm working with limited resources.)
Only a few times post-wreck have I met another person with a brain injury. But there's an instant appreciation for one another when zig-zagged paths do cross. Was is Plato who said, "Be kind, for everyone you meet is fighting a hard battle." Yeah, we know.
Let me be bold, honest and vulnerable. A brain injury can be a lonely thing. Some days I'm caught off guard when this element of aloneness sneaks up on me. Not that I'm brushed away, ignored, avoided or forgotten. It's that the injury is forgotten. Maybe not totally forgotten, but since it’s not as blatantly obvious as a blind eye; and since I function well enough to keep from drawing too much attention to it (since a majority of the hassles take place on the inside) - it's easy to let the disability slip your mind. It slips mine from time to time. So it's not always apparent why I don't join in on all the reindeer games. It is for this reason of public solitude that camaraderie between the damaged blooms.
Though we injured few function differently - those of us who can function - we can be aware of, acknowledge and appreciate the hills we are climbing.
One day during my first month at work I was overwhelmed and overtaken by the piles of details and forms and dates and digits and exceptions and exclusions and TPS reports that are standard in government work. I don't share my news with everyone I meet. "Have I told you about my condition?" becomes a tired conversation, especially when the recipient hears it for the fourth time. I usually just struggle through. Like when I'm in a foot race for twice as long as the others, but still finish; so it is with cognitive tasks. If I fight through the fog long enough, eventually I hack my way to some clarity. Each of the days at this job, however, are in a different group. Each day's daily complications built on the previous day, solidifying the barrier between me and understanding more and more with each brick.
The other choices I had were to quit or flounder out and get fired. So I sucked it up and went through the open door with option number three to my supervisor, Mike the Marine.
He understands struggle.
He hasn't suffered a brain injury himself, but he has friends who have. I joined in their camaraderie via Mike during our talk.
Beginning forthright as I came from around the corner, closed his door and began to sit: "I have this condition..."
I didn't expect this to develop during our meeting, but this memory (in whatever shape it may be) will last way beyond my position at the VARO. It was like the surprise that comes with winning the jackpot. You wish for it with all the change you can spare, but are realistic and certain it won't happen. I gripped the lever with what hope I had as I started explaining my reason for being so lost. Somehow, the words fell out of my mouth in perfect order as I opened up. I was able to explain with simple clarity what it's like to work with a brain that's as reliable and consistent as a fickle Chihuahua. Up to this point I hadn't been able to find a way to walk through this type of conversation, putting on the table the scrambled thoughts I have in mind. The concept of a injured brain explaining itself clearly, spelling it out in a way that is easy for a sound mind to comprehend, is an awkward task. Explaining the look of the sky in the morning to a blind person takes some linguistic and mental somersaults. For ten years I've been trying to voice these squiggled thoughts, without a satisfactory picture to show for it. Until it happened that day, prodded on by my desperation as I took a gamble on a chance to be understood.
Early on in our talk, Mike joined me with his understanding. "My friends will all say, 'I have a great memory, I just don't know where I put it.'"
My heart lifts to the back of my throat as I choke out through my unrestrained smile. "That's exactly it!"
I go on to explain there's a filing cabinet in each and everyone's brain. They're organized with labels from 'names of people' to 'what I did yesterday'; from 'i before e except after c' to 'old M.C.Hammer lyrics'; from 'where I've lived' to 'State capitols'; from 'where was I supposed to go?' to 'this is where you put a comma,' ... And everything else and everything else in between. There's only one difference between me and Susie Lee, I tell him. It's not that I have less files. I don't have a smaller filing cabinet. And it's not that I can't read. The difference is that the tree took my standard issue cabinet, shook the hell out of it, dumped it over and shuffled together all the files all over the floor.
And when I'm around distractions, that's when all the big box fans in the room kick on.
So if I'm staring at you blankly while you're giving me instructions, I'm not day dreaming or zoning out. I'm scrambling to make sense of it all as I sift and rake through the clutter.
Due to the mass disruption of the filing system, my mind is pretty much free to wander whenever and wherever it wants. Prolonged undivided focus on reading, conversations, praying, eating - it's simply not going to happen. Due to the futility of trying to keep all the wild thoughts together, I gave up attempting years ago. Let the wild ponies run free. This is why you'll catch me at times chuckling like a moron even though I'm surrounded by zero things funny. There's always a stream of random thoughts flowing through my mind, linked to the previous one in some way. The sight of a street light out of the corner of my eye can trigger a cascade of thoughts, and the domino effect might lead to Darth Vader dancing with Pokémon. Try to keep a straight face.
I remember a conversation my granddad was having while we were eating cheese dip in their kitchen a year ago. He said he likes to play the 'what if' game from time to time in regards to his life choices. With 80+ years to work with, he has a lot of material. What would his life be like if he didn't join the Air Force 60-some-odd years ago? Or was a farmer instead of a dentist? Or if he lived on the mountains instead of by the lake? This game isn't coupled with regrets, he said. It helps one appreciate and respect the present. I could be a thousand different places, and I'm here.
The occasional run through this game for me is usually bitter-sweet*. How would things be different if I'd gone to a different university? What job would I have if I had different degrees other then these psychology degrees leaning against the shelf collecting Freudian dust? What if I'd never moved to Japan? What if I'd never come back? What would our life be like if we hadn't stayed together? (Or if I hadn't met her and given her a chance - and she giving me a chance - back when we met in the first place for the second time in 2010?)
Or the granddaddy scenario: What would life be like had I not slid into that tree and totaled my car that February night, waking up to hear about it mid March? Pre-February 21, I was more than capable. Physically and mentally I could hold my own. You could say the catch was that my ability outweighed my interest. What good does it do to be able to bench so much weight, and run so far, if it's of no interest to the user. It's impressive to be able to comprehend the material in a number of different AP courses; it's a shame to choose to easiest options. The Pre-Me just wasn't ready to live.
That's the funny thing about it. The tree knocked the abilities down a few notches. But that's what it took to realize life and to live with what I have left.
I'm an old, beat-up and rusty car now. I can make it up the hill. I can make it to Kansas and back, it just takes me longer. It uses up more gas. And it's a hard drive. All cylinders firing at a full 60% makes for more challenges along the way. But, being willing and eager to use all 60% brings about better results than idling along. And, God-willing, this car, beat up as it may be, if regularly taken care of, kept running even on the cold nights, will make it.
Slow and (somewhat)steady..
*and it is more sweet than bitter.