Janene is gone from us, deep in the darkness of dementia. Two years ago, though, she brought out this remarkable observation from that darkness: The Lord Jesus is taking care of me and my brain, and it makes all the difference.
So while we watch and pray, Janene and Jesus are in a kind of communion we cannot really observe.
Last week Jay shared with me another glimpse of that communion. Seriously, can we really doubt our Lord’s immanence, his moving in the deeps of our own lives? Whether you know Jay and Janene or not, you will welcome this sign of the “riches of assured understanding.” Read on.
Jay writes:
It began as a normal visit. But what “normal” has come to mean when visiting my dear wife Janene who has fought a losing battle against dementia for fifteen years is something like this…a child-like scream of delight when she sees me, no meaningful verbal exchange, far away looks of confusion, obsessive repetition of three short phrases, smiles in response to my touch, and impenetrable, mysterious, non-verbal messages from those enormous, steely blue eyes. It is strangely comforting and profoundly heartbreaking to be with her…every time.
A normal visit also includes that tender moment that defies some of the professional’s pronouncements that “she really isn’t there anymore,” when Janene points to my wedding band, smiles, and puts her left hand on mine. And ever the hospitable hostess when I arrive for lunch, she tries with the precious few remaining words to direct the memory care staff to prepare my plate before hers. Never a bite will she take until I am situated to her satisfaction. So the gracious hostess element still remains, however obscured by the onward march of her rare and pernicious disorder, and gives testimony to her rich, Texas roots and traditions. Janene is not completely gone.
I find myself wanting to curate each word, each smile, each nuance of the person with whom I once lived a robust life, because in all probability she will soon be mute and may well not recognize me at all. Frontotemporal Dementia (FTD) has long since stolen the lion’s share of her vibrant personality stored in her frontal lobe. And her temporal lobe, custodian of the verbal and semantic function of who we are, has only three or four brief and cryptic expressions that remain. So like the last day of an exhilarating vacation, or seeing your youngest off to college, or savoring the remaining light of a glorious sunset, we treasure the moment and the seemingly insignificant becomes sacred.
But I still was not prepared when a routine visit with Janene evolved into a spiritual awakening I may well be dissecting for years to come. I was dumbfounded and stunned. Comforted too. It began when I found her on a secure backyard sitting area basking in the Colorado sunshine whispering, “It’s beautiful,” one of her three remaining phrases. Then with her eyes closed and nearly transfixed in the sunlight, while holding my hand she began to repeat these words and this phrase over and over in a soft, sweet, and inviting tone, “Take a larger way, take a larger way, take a larger way, take a larger way.”
At first I anxiously shrugged it off as yet another nonsensical, meaningless communiqué that FTD is so adept at creating from even the most brilliant minds. She has lost the sequential, logical capacity to communicate meaning. Yet this cryptic sentence held together like none she had uttered in many months. And why repeat it? This message had none of the urgent, almost torturous angst that so often accompanied Janene’s failed attempts to put words to what was on her mind. Of all the millions of word combinations that she has lost, why would this unique arrangement of words be retained to express some desire of her heart? So in a rare moment of contemplative mindfulness I entered into this precious moment with Janene and listened as deeply as I could.
To my utter amazement, it became perfectly clear that Janene’s spirit was sending a message to mine. Tears flooded down my face as I absorbed the intimacy of this most unexpected, unprecedented, and profound message. How could she retrieve these words that have long since been gone, and why these exacting and particular words? I managed to contain my emotions well enough not to disturb Janene as she repeated this simple, profound phrase for at least three or four minutes with her eyes closed—like a prayer, a blessing, a ritual, a reassurance, a consecration, a Janene-like pep talk, an anointing, a liturgy, a calling, or a benediction. I left the facility in a pondering frame of mind, yet certain of one thing—Janene had delivered a critically important message to me, unmistakably so.
One day later, I came upon another serendipitous confirmation of the message. You see, I am underway with the bitter sweet ritual of “going through her things,” reflecting on the abundance of memoirs and why she kept them, and marveling at the capacity of her mind to write and think about things that matter. Most astonishing was a plaque I found, given to Janene and me years ago from a group of campus ministry staff I had managed in Texas, Oklahoma, and Arkansas when I left for graduate studies at the University of Denver. Inscribed on it were the lyrics to one of the walking songs penned by Bilbo Baggins, J.R.R. Tolkien’s character in The Hobbit.
The Road goes on and on
Down from the door where it began.
Now far ahead the Road has gone,
And I must follow, if I can,
Pursuing it with weary feet,
Until it joins some larger way,
Where many paths and errands meet.
And whither then? I cannot say.
Amongst the inevitable and unavoidable consequences of dementia, or any progressive disease for that matter, is that life becomes small. The examples of this dreadful process in Janene’s life are too numerous to name. She once rode her bike 2 to 3 hours a day and now she eats three meals a day and walks 30 steps back to her room to rest. Her turbocharged mind once devoured nursing school anatomy and physiology texts and complained that nursing was too easy. Now she is unable read. Attending a liturgical worship service was often a highlight of her week, but now she can’t understand the word Eucharist, or know what the elements represent. And perhaps the most heartbreaking reduction of all, she no longer recognizes the three daughters into whose lives she poured her own for over 40 years. So pick whatever vantage point—physical, spiritual, social, intellectual, familial—Janene now lives in a shrunken world and knows an existence that is unimaginably small.
So for my dear wife, from the depths of her truncated existence and in the unrelenting grip of a degenerative neurological disorder, to collaborate mysteriously with none other than the likes of Tolkien on the notion that a larger way not only exists, but that I should take it—is mind-boggling, humbling, and perhaps more than anything else, profoundly encouraging. Indeed I am filled with wonder every time I recall the event, and even so as I now attempt to discern its meaning. A dear friend of mine captured the essence and spirit of her message by saying, “I believe what she is saying to you is from an extremely deep spiritual connection that is beyond our comprehension. We can only embrace it and gasp in absolute wonder.”
Janene exuded this power of the human personality…the truly human larger way. She not only yearned for, but could deliver on the intimacy, beauty, and adventure of a full life. She wrote a book on mid-life women’s health and started a consulting business to meet the need, earned an MBA in her 50s, learned to ski in her 40s, road biked through the Rocky Mountains with Women on Wheels, chaired the board of Denver Inner City Health Center, went sky diving, and served as both the CFO and COO of MOPS International at the same time. She happily left her native Texas to support my graduate studies in Denver and taught me volumes about intimacy in the first decades of our relationship. Before the FTD era, Janene longed to be truly alive, to embrace the larger way, to be a soul mate, and to hear the voice of God in the midst of her fully engaged life.
Though she is now confined to this inexplicably small life, still she wants me to live a full, robust, meaningful life. In and through the Spirit, Janene must somehow know how tempting it is to take the smaller way, to allow this overpowering disease to define me and my life, to play small, to turn my back on possibilities of the future. She is saying, “Don’t let it happen. Take a larger way.” That is what took my breath away on the sun porch several Saturdays ago. It’s a stunning thing to have not only a front row seat to tragedy and suffering, but also to know unconditional love of this depth and under these circumstances.
As if I needed to add yet another layer of complexity to this beloved message that occupies much of my contemplative and solitary hours of late, there is a brief message from Janene on my iPhone from several days ago that goes like this: “Oh, Jay, take a larger calling away. Take a larger calling away. Away. Away. Take a larger calling away, calling away, calling away. Take a large calling away.” These words, and these alone, she repeats nonstop for two minutes and one second, and then hangs up the phone that she has somehow persuaded the reluctant memory care staff to let her use after mysteriously salvaging my cell phone number from her atrophied temporal lobe.
Janene wrestled with herself, her mind, her advisers, and God more than most about how to construct a fulfilling life. From early Bible-belt perspectives like “God has a wonderful plan for your life,” to discerning the Lord’s will, to discovering her unique abilities, to co-creating with God a life of meaning and purpose, Janene thought long and hard before using a word like calling. She also had periods of existential doubt and skepticism, concluding that it must be God who was frustrating her vigorous attempts to find her own larger way. So it’s not surprising actually, that she would add this powerful word “calling” to the message she so persistently wanted me to hear.
We sometimes quip that “things happen in threes,” for good or bad. Well, here is the third coincidence, random occurrence, or divine synchronicity, depending on your point of view of the things that take us just beyond the reach of rationality. Within another 24 hours after Janene added the “calling” notion to her message, I received the morning blog of Richard Rohr on the topic of vocation. Here’s why it caught my attention and why my soul leapt again upon further reflection on this poignant communiqué from Janene.
“Vocation is one way in which we discover our True Self. I’m not speaking so much about education, career, or livelihood…In general, it is a Larger Life that somehow calls us forward (vocation means a call or summons in Latin), more than we call it to us. You are a part of a larger thing called Life. You and I don’t have to figure it all out, fix everything, or do life perfectly all by ourselves. All we have to do is participate in the One Life. To find our unique niche in that Always Larger Life is what we mean by vocation.”
“Summons.” I love that word. It’s so fitting here. And it puts that unsuspected twist to a traditional concept. In its simple form it means “an authoritative and urgent call for someone to be present or to do something.” In the decades before the disease and when Janene was fully alive as a wife, a mother, a sister, an executive, she never shied away from a summons, either giving or receiving one. She expected no less from others than from herself…show up and deliver. Her message hasn’t changed a bit. When I reflect on the convergence of these three “coincidences,” the power of these particular words in what may be Janene’s last message to me, the surreal experience with Janene’s spirit on the sun porch–that she is delivering the kindest, sweetest, most unconditionally loving summons to me–I am reminded of two cryptic statements from Lief Enger’s Peace Like a River when reporting on the inexplicable.
“Make of that what you will.”
“Listen: There are easier things than witnessing a miracle of God.”
Ad-Free & Subscriber Log-In