Father’s Day, Tay-Sachs, and The (Beautiful) Now

On October 3, 2012 I was having a terribly difficult day.  It was Miss Elliott’s birthday, her fifth and the first I was to “celebrate” without her.  I was wallowing in pity and sadness for myself.  I told my friend, Dr. Eric Fier that I was having a hard day.  He told me:  “We must find meaning in our misery.  Otherwise, it is pointless, no?”  That one simple statement propelled me out of my state of sorrow and into action.  I began writing the book about my Miss Elliott’s life that would become Three Short Years.  I was comfortable confiding misery in Eric that day because as the father of a daughter who had also been lost to Tay-Sachs he understood how I was feeling and why, from an insider’s perspective.

Below you will find the beautifully intimate guest post by Dr. Fier that he has so graciously written for this blog in honor of Father’s Day.

~~~

“Glimpses of love and joy or brief moments of deep peace are possible whenever a gap occurs in the stream of thought. For most people, such gaps happen rarely and only accidentally, in moments when the mind is rendered “speechless”… Suddenly there is inner stillness. And within that stillness there is a subtle but intense joy, there is love, there is peace.”
–Eckhart Tolle (“The Power of Now”)

I could recite his stories as if I lived them; as if I was first-hand witness to the dopamine-infused ambition that propelled my father past any reasonable assessment of risk. He joined the Air Force on his 18th birthday, as intent upon fighting the Nazis as he was upon escaping the forces of tedium at home. Returning from his 10th bombing mission, his B-17 was shot down over German-occupied France.

New Years Eve, 1943; I was minus 24 years old.  He was hidden by the French underground; captured, beaten, and imprisoned by the Gestapo; and ultimately liberated from Stalag Luft 3.

By the time I arrived, he was transitioning from an intense 20 years as a highly-decorated New York City cop to a cush desk job with the feds. While it still indulged a few of his novelty-seeking A.D.D. non-sensibilities, it ultimately involved far less bombing and shooting. His moods cycled between painfully bored and deeply depressed.

“I was raised by a father living in the shadow of the version of himself he most missed,” I recently told the imaginary shrink in my head. It was as if his life was lived between 1943 and 1969. The next three decades simply served up a re-warmed melange of reminiscence and eulogy.

Our relationship was one of warm, respectful non-engagement. And as I busied myself with the ill-conceived challenge of maintaining an unsustainable image of perfection in his eyes, I completely missed that he was doing very much the same. He re-told and re-lived stories of his heroism as if it was the only defining aspect of his life, the only proof of his worth.  Memory of the past was the primary vehicle affording him access to a sense of value.

And then it was gone.

I used to think of Alzheimer’s in the way I used to think of Tay-Sachs, before Rachaeli: a cruel, insidious usurper of all that defines you. Any neuro-degenerative process, I thought, leaves you a lesser version of what you once were.

And as my father’s Depression morphed into Dementia, I watched him fade into an adult-sized version of a frightened child — perpetually searching for an ounce of the comforting familiar. Sometimes he asks for his mother; sometimes he just shakes his head and cries; sometimes he refuses to swallow his pills; sometimes he kicks at the door; sometimes he will only eat dessert.

I push back against my own depression as I internalize that I am now the father to the child that is my dad. I am, for the 2nd time, raising a child I cannot save.

Phrases I came to detest — like “quality of life” — again re-entered the lexicon of my psyche.
Again I am praying that what looks like pain is not.
That what seems like fear is not.
That what resonates as loss is not.

Today my father is 90.
For one year, I am precisely half his age — the same age at which he became my father.
After 45 years, it seems our roles switch. The OCD within me strangely enjoys the intrinsic  symmetry.

Most days, his speech is jumbled and confused and filled with neologisms courtesy of cortical volume loss. I resist the urge to press for a translation, and try to look beyond the words.

I decide that the First Two Commandments of Improv Comedy apply nicely to communicating with someone with dementia:

1. Don’t feel the need to speak. Sometimes just look at your partner and connect.
2. When you do speak, never negate what your partner has said; only “Yes, and…” them.

It is Father’s Day. He does not realize it, of course, but he seems to trust me on such things.

He smiles and waves when he sees me. He is not sure exactly who I am, but I am familiar in a positive way. I find a seat next to him in the makeshift living room where he spends most of his waking hours, surrounded by others who look at me as if I might be their son, too.

He smiles again and grabs my hand tightly, looking at me as if I haven’t been here in forever.
It’s been 2 days.
He calls me by his brother’s name and asks me how I am.
And then we sit.
The choreography of our time together is not terribly complicated:
I will stroke the back of his head, right where his silver hair emerges just above his neck.
I will run my hand up and down the top side of his thigh.
I will plant spontaneous kisses on his perpetually scruffy cheeks.
And we hold hands. A lot.
Most visits, we don’t speak much. Pleasantries, mostly — and even then, I’m not sure they matter. Anything informational seems unimportant, if not a distraction from what matters: just BE-ing.

And so we do. We just BE.

There was a time when it mattered to me if my dad knew the day of the week or the names of my kids or what city he was now living in. It was important that he remembered the hero that he was. The lives he took; the lives he saved; the lives he created.

I needed his dementia to be merciful, selective, patient in the reaping of his memory.

It has not been.

Sometimes I bring him albums filled with pictures and articles detailing his war experiences or his years as a decorated cop. He smiles with a look of polite unfamiliarity. He will nod and sometimes point to his name beneath a photo. But it fails to elicit a visible sense of pride or even significance. The past is not simply non-remembered now; it’s non-relevant. As is the future. Speaking of what we will do next week or next month or next year is immaterial. He will remember none of it 10 minutes from now, much less by the time tomorrow arrives.

He lives completely and exclusively in the Now.

The staff inform me that an hour before I arrived, he was crying and kicking at the door, insisting he needed to “go home.” When I ask, my dad says he’s had a great day. “I’m behaving,” he promises.

“No kicking the door?” I ask. “No kicking the door,” he repeats.

He also tells me he hasn’t had breakfast yet, though it’s 11 AM and I can see vestiges of scrambled eggs on his shirt.

The Now is all that exists.

While he sustains no identifiable memory of his past accomplishments, he also seems to carry forward no recollection of past pain. He has forgotten that my brother is paralyzed. He seems unaware that his parents have died or that my daughter has passed. News of such things visibly upsets him… And then, after a moment or two, it’s gone.

He is similarly free from worry about the future — a construct that matters little in the Now. He doesn’t ever ask about what “will be.” There is no formulation of future potentialities about which to obsess. There is no future-focused fear. He lives exclusively in this very moment, as exempt from worry about what will be as he is about what already was.

And so we BE.

We speak little as I stroke his hair and rub his leg and plant small kisses on scruffy cheeks.  I allow myself to join him in the (beautiful) Now.

“When the compulsive striving away from the Now ceases, the joy of Being flows into everything you do. The moment your attention turns to the Now, you feel a presence, a stillness, a peace. You no longer depend on a future for fulfillment and satisfaction — you don’t look to it for salvation. Therefore you are not attached to the results. Neither failure nor success has the power to change your inner state of Being. You have found Life underneath your life situation.”
— Eckhart Tolle

It doesn’t take me terribly long to realize that I am already familiar with this entity, this Now, in which my father lives. For 9 years, I was gifted with the chance to explore this timeless, unboundaried space. As my daughter relinquished each of her physical capacities to Tay Sachs, Rachaeli was unable to meet me in my world. Mine was, of course, filled with benchmarks and milestones and standardized measures of growth and development and accomplishment — all plotted over the axis of linear time. And none of which leaves much room to celebrate a child with a neurodegenerative (read: one way) illness. I quickly realized that I may choose to mourn what is not, or celebrate what very much is.

Once I learned to listen differently, I heard Rachaeli’s invitation to meet her in the Now.
This required leaving behind all expectations — silly paradigms written for imperfect souls.

To be deeply present with my dying child, I needed to relinquish recollections of her past and mental forecasts of her future. I needed to remember that her soul is unbound by time; that all we have — perhaps all there is — is Now.

In this Now, I learned to hold Rachaeli just so: to support her head as I allowed her posture-less frame to rest comfortably in the cradle I created with my arms, chest, and lap.

I learned to speak in non-words: in whispers and soft kisses and sighs and mmmmms — a language in which our souls became completely fluent.

When her waves of seizures hit, I learned to hug through them. To fold her into my arms and lean into the seizure. To remember that this physical process simply represents another form of invitation to hold her tightly and align our souls. And I learned to de-emphasize linear time: where she was 6 months ago or where she would be 6 months from now became completely secondary to the beauty of this very moment.  So too,  what I’ve accomplished, earned or created was of zero relevance to my daughter. My successes and my (many) failures were wonderfully immaterial. All that mattered was this very moment. All that mattered was Our Beautiful Now.

In his text on Kabbalah, “God is a Verb,” David Cooper describes this state of being as the “Binah (level of) Consciousness.” He writes:

“The experience of being in Binah Consciousness is completely sensual. One does not dwell in reviewing past events or in planning for the future. There is only the experience of each moment as it arises. In this state of mind, each sound is exquisite, each visual impression unique, each odor is captivating. Once we are free of our sense of our own selves, we enter a state that is often defined as rapturous. Quite simply, it is delicious to be alive without having to remember who we are.”

Sometimes when I sit silently with my dad, he will spontaneously begin clapping his hands — for no identifiable reason but (what I presume to be) the sudden experience of joy. Sometimes he will blow kisses at no one in particular. Or sing a song he has clearly made up. Sometimes he will squeeze my hand tightly, lean over and whisper, “I love you, compadre” — as if it’s a secret. And as if I’m Mexican.

I am learning to celebrate these moments of joyfulness.
I am learning to relinquish my anger at Alzheimer’s.
And in moments of (seeming) pain, confusion, and fright, I’m slowly learning to remember that they are simply moments. Moments that will pass. Moments that I need not “fix.”
These are simply moments in which he is asking me to hold him tightly and align our souls.
An invitation into the Beautiful Now.

Thank you, Rachaeli.
Happy Father’s Day, Dad.

Eric & R
Eric and his daughter, Rachaeli
Read more from Dr. Fier at http://www.rachaeli.com

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