By Joy Leccese

Sunday, June 14, 2015

The window is wide open; cool, still air and morning songbirds announce an almost-summer dawn at 4:15 am “sun time,” as opposed to daylight savings time. A faint blue-gray sky illumines the pines on the edge of the property—a lovely shade silhouette.

I am floating through these days and nights as if in a dream. Day and night, night and day, I wander through my hours in endless tabulation: to-do lists, calendars, wondering. How will I do this? How will I make this transition from six decades of a caregiver persona, with no one I am responsible for every day except myself?

Perhaps that is the big shift in a small word: from being responsible for someone else, to being responsible to myself.

It is an entirely new country, requiring an entirely different mindset, and a new vocabulary to go with it. Not everything about it will be new and different, of course, but the one-big-missing-element of my days will be 700 miles away from my former daily life.

We speak of gaps, spaces where something was, but no longer is. Places in the heart where someone used to dwell, but no longer inhabits. Or, ethers that choke us, fogs that cloud our vision, the smoke and mirrors of magical thinking when the one thing—or person—we long for is out of reach.

All this occupies my mind these days. I have cared for this person for 33 years—more than half of which have been post-traumatic brain injury.

He hasn’t died.

Quite the contrary. He is living brilliantly, if aimlessly, and he needs to step into his own life more fully. And so, abruptly, I give birth again to this life by letting him go so far away from me that if he stumbles, I will know it in my heart, but I won’t be able to rush to his side.

I won’t be the one to catch the subtle signs that he is about to have a seizure. I won’t be there to stop him, take him by the hand, and sit him down so that he doesn’t fall. I won’t be the one to hold tight to his wrists when the tremors deepen, and his arms begin to flail, and his eyes roll in their sockets, visionless.

I won’t be the one to sit and hold his arms down while his legs stiffen and his body thrusts those long, sturdy limbs aimlessly, fitfully into the air; or watch him writhe unconsciously, breathing gutturally, with saliva bubbling and gurgling, foaming around his mouth, sweat beading on his brow.

I won’t be the one to explain to the EMTs who he is after a seizure. He is unaware that he has had one, has no memory of it, and in fact is defiant and ornery and irrational for a good hour or two afterwards.

How will they know whom they are caring for in those fragile moments post-seizure?

They won’t. They can’t.

They can’t know the person inside. They don’t know the Zack who knows a million lines of dialogue verbatim from a thousand movie scenes. They don’t know which eye has no light perception whatsoever, and which one has just enough to get him through his days with a cane, with strong lenses in his glasses, and with no depth perception to navigate steps, though he does so with amazing accuracy 90% of the time.

Those EMTs won’t know what allergies he has, or that his favorite snack is a Tabasco Slim Jim on his road trips with me back and forth between St. Louis and New York for decades—and now to Champaign, Illinois.

Who will remember that he was, in a far off fairy tale, a four year old funny boy whom his cousin dubbed “Zackerdoodles”?

Who will come to know the huge baritone guffaw that erupts when he’s watching for the nth time some episode of “Everybody Loves Raymond”?

So many little things make up the big things. Who will clean up afterwards when his Milano dark chocolate layered cookie falls blindly into his lap, melting all over the front seat fabric with smears of  brown goo that nobody sees until he steps out of the car? Ick. But it’s my ick to clean up. I won’t miss that one.

I “see through a glass darkly” as I count down to D (Departure) Day; it’s 14 days from now.

This is the first of many inner travelogue accounts of this journey. It is but a fortnight away, the reality of the breach is claiming a bigger and bigger acreage. I loosen the grip with one hand, and apply handcuffs to the other.


Joy LecceseJoy Leccese is a Transformation Life Coach. Her greatest joy in her work is helping others find their voice, grab their greatness, and live their best mojo-filled lives. She brings to her clients over 35 years of experience, education and insatiable curiosity about what makes people come alive. She challenges people to look within, shed limiting beliefs, and embrace life with courage, faith in themselves, and an ever expanding awareness of infinite possibility.

She is the author of the forthcoming book “Reconstructing Joy: A Seven Step Blueprint for Moving on from Trauma, and Embracing Your Gutsy, Juicy Life!

Contact Joy at for upcoming events, and  information on how you can grab your mojo and thrive! Your greatness is calling: Answer the phone!

Photo: (source)

Editor: Alicia Wozniak