Sitting still has never been my forte. For that matter, neither has been moving at the speed of “normal” - whatever that is. When I was Callen’s age, my dad used to joke about my ability to play the Minute Waltz in 30 seconds. Because even as a six year-old I had the keen sense that there were things to do, places to go and people to see. So why would I take a full sixty seconds to do what could easily be accomplished in half that time?
Much to my father’s (and anyone else who shared my orbit) dismay, aging didn’t mellow me. Somewhere between kinetic and frenetic, my energy level was often my most visible personality trait. Had ADHD been a “thing” in the ‘70s and ‘80s, it most certainly would have been my “thing”. But it wasn’t – and so, thankfully, I was allowed to bop, zoom, flit and- yes, occasionally flounder - through life with labels no more pejorative than “rambunctious”, “feisty”, “ambitious” and “spirited” attached to my persona. And this was all before discovering that first delicious drop of caffeine to (jet)fuel my drive.
So this is who I am. Or was. And would likely have continued to be - rather easily and unashamedly so, I might add – if not for Callen’s cancer. So for what is to follow, I feel the need to apologize. Because I don’t want to admit this: not to myself, and certainly not to others. And I don’t want to be judged: not by myself, and definitely not by others. And most importantly, I don’t want to make this about me. But truth be told - which is all I’ve ever tried to do in this space - these past few months have damn near been the death of me. And circumstances being what they are, trust me when I say that I do not use words like that lightly. Or even euphemistically.
But being static is exhausting. Going nowhere is excruciating. Doing the same thing every day and hoping for a different outcome – well, that’s the textbook definition of insanity!
And I just couldn’t take it anymore.
I’ve run a few marathons in my day, and I don’t just mean metaphorically. I mean actual rubber soles-meet-the-road 26.2 mile contests on foot. I am accustomed to conditioning myself physically and mentally for tasks of endurance, and equally accustomed to – despite abundant preparation and training - hitting the proverbial wall. But every encounter with that wall - every indelible mark it has left on my body or mind - has been in the name of progress. A personal, if not somewhat masochistic, growth chart of sorts.
Besides, I’ve always been able to beat that wall - if not by barreling through it, then by finding a way around or over it. But this? This is an unprecedented contest of strength and will. And I have slammed heart first into an unyielding wall of caregiver fatigue that has bested me in a totally and devastatingly unfamiliar way.
Ironically, it was that which usually saves me that set me off. This past May was unusually rainy, so by early June I was looking for an indoor alternative to my morning runs and checked out a spinning class at the local Y. Now, indoor cycling is nothing new to me, so I knew exactly what I was getting into – or onto, as the case was. I strapped myself into the pedals, adjusted my seat, and off – sort of - I went. For sixty grueling minutes under the instructor’s maniacal guidance I grunted, groaned and sweated my way through imagined Rocky Mountain inclines, rolling Arkansas foothills, and flat Nebraskan plains. The class was nearing its end when the instructor barked out orders for a final six-minute cadence. Lights low, air thick with humidity and stale with heavy breath, a digitally remixed “Chariots of Fire” began booming through the speakers.
At first the music was motivating; or, at least, distracting. The beat propelled me forward and out of my seat in sweet anticipation of the end. But as the music droned on, my mind wandered to the image of those storied young men running on a beach… running toward a clear endpoint and certain victory, their progress visibly marked by a trail of footprints left in the sand.
Suddenly, that which should have been inspiring became infuriating. Clearing one mountain – perceived or otherwise – simply yielded a new one to traverse. The concept of true progress was as much an illusion as the distance my odometer said I had covered during that class: I was strapped onto a bike that was bolted into the ground, for Christ sake! I was literally going nowhere, fast!
As the futility of my situation struck me, tears of anger and frustration began to flow hot and fast, mixing with the salty perspiration pouring down my face. I struggled in vain to stifle involuntary sobs, and hoped those around me would interpret my paroxysmal gasps as nothing more than an effort to reoxygenate my now-hypoxic muscles.
The song came to its dramatic and inevitable conclusion, but rather than join the class in a much-needed cool down, I unclipped from the bike and skulked (as best I could on wobbly legs) out the door. I needed to get away before the lights came on and exposed my blotchy face and heaving body for what it was: evidence that I was in full meltdown mode.
I remained there for more than four months.
I don’t know what it was about that scenario that broke me. Why – during a rare hour of “escape” from the otherwise tedious and repetitive nature of the preceding 27 months – I slipped into an emotional abyss from which I am just now beginning to emerge. Why what should have been an opportunity for release turned into a gripping depression from which, for far too long, there has seemed no escape.
And so, if during this time you’ve been on the receiving end of a 15-minute diatribe when inquiring “How is he?” Forgive me – or indulge me - for I simply don’t know what to say anymore. Or don’t know how to say it simply - for it just... isn't.
And if you’ve been met with an incredulous stare when you attempt to cushion disappointment with any statement beginning “Well, at least he… got to attend school for one full day this week / enjoyed one day of the holiday when the others were ruined by hospitalization / got to throw up with a view of the ocean / has hair now”, I beg for your understanding. Because while seemingly counterintuitive, it is often difficult to see or celebrate progress – particularly being privvy to the full cost of each and every gain – when mired in the process.
And if I scoffed at your marvel for what they can do with his type of cancer these days, and met you with an “If you only knew…”, I want you to know that I don't really want you to know. EVER. Not on any more personal level or in any more intimate detail than by your continued and willing association with us. Please. May this be the closest to “getting it” that you ever have to get.
And if I downplayed your encouragement that the “end” is getting closer every day, know that I am fully aware that I’m the one who put that countdown out there in the first place, and thus have to live by that clock. But it no longer represents what we once thought it did. So while the fear of the impending “ever-after-June-2017” should not overtake the “happily” moments in our midst, it often does. And it will continue to do so until Jim and I know that we have drawn our last breaths before any of our four children has.
It will come as no surprise that I have not been spinning since that day. At least, not in that capacity, and certainly not of my own volition. No, that hour in the saddle left me raw and sore in too many places that are uncomfortable to talk about. But just this past weekend we did venture out on our bicycles for the first time since the week before Callen was diagnosed. And with the sun shining on our faces and the breeze at our backs, it was actually possible to believe – for the first time in far too long - that we just might be getting somewhere.