Tag Archives: sorrow

Speaking joy

When my children were learning to talk, I remember finding the process of language acquisition so amazing that I briefly considered going back to college to study it. I have two children about 18 months apart in age; many of my friends had babies the same time I did, so I had a range of small children to listen to and be amazed by. Each child seemed to develop their own method of learning to talk, beyond the general similarities among human beings that many scientists and linguists have studied. I wondered what made those small differences–the way parents spoke to the child or to one another? The temperaments of the children? Exposure to music or grandparents, older siblings, the radio??

I can admit that I was an exhausted young(-ish) mother, but also so intrigued. I wanted to learn as my children were learning. There was such excitement and joy–it seemed as though every new day brought further leaps in communication as my kids discovered pronunciation, verbs, adjectives, vocal stresses, and body language to convey what they were noticing, experiencing, needing, complaining about. As a lifelong learner, autodidact, and amateur researcher, I found myself reading up on language and its acquisition and history.

A few moments stay vividly in my memory. One summer day when we had a sun shower, my barely two-year-old son pointed up to the sky and announced, “Sun out. Rain coming down.”

I think of that with joy every time we get a sun shower. Over 30 years later.

~

Now, I’m trying to find the same fascination, the same learning-endeavor, with my mother’s loss of speech. I want there to be some joy or benefit in this reversal of language, something I can take away from it other than a deep sense of losing the person she was. This has meant reading books about dementia, aphasia, aging, and all the rest. It’s meant trying ways to get her attention and jog her memories when visiting her; talking with her caregivers; and reminiscing with my siblings, as well as conferring with them about her current situation as it evolves.

It’s meant finding some humor in the inevitable mix-ups that happen when communication gets woefully impaired. It has also meant finding peace, or comfort, in just sitting beside my mother in silence, holding her hand in her quiet room. She was always a fairly reflective person–capable of hilarity and chattiness, but more often keeping things to herself. Maybe revealing her thoughts some time later. Now? Who can tell. I find that I return from my visits with her feeling increasingly reflective myself, wondering where she “goes” when her attention seems to wander, wondering what she would say, if she could. I find myself wanting to research, even more than I have, information on neurology and cognition and what happens when the neural synapses that lead us to language begin to get trimmed away.

Not everyone who gets past 90 experiences such neural shut-downs in the language-generating parts of the brain; I know several folks who were, and are, quite fine with speech and thinking into their late 90s! Alas that my mom isn’t one of them. My task is to find joy in whatever her moments of being are at present while she is still physically among us. Not always an easy task, it sometimes saddens me. But joy tempers sorrow, just as sorrow so often tempers joy.

Momma. If you could only read this, or understand me when I say it: I love you.

Untethering

I’ve read many memoirs and non-fiction books about cognitive decline and living with a beloved person who has a neurodegenerative condition; from Oliver Sacks to the recent biography of Terry Pratchett and many of the books we’ve read in my “morbid book group,” information in these texts connects with the personal emotions involved in deeply complicated human ways. There are also quite a few poetry collections themed around this type of loss, and I ought to compile a list one of these days, because poetry has been helpful to me as my family and I contend with elders dealing with forms of dementia (and there are many forms). That fact has led me to wonder whether readers even need another poetry collection centered around cognitive loss. Since so many of my poems during the past four or five years intersect with or explore that topic, I have considered making a manuscript of them. I hesitate. Too much sadness?

Yet while the circumstances that evoke such poems are usually sad, the disease progression differs, as do the personalities of the persons with cognition loss and the personalities of their loved ones. Perspectives on the persons and the diseases also vary a great deal. Similarities exist–enough to make a reader feel recognized–but situations and value systems mean there are as many ways to write about dementia as there are to write about anything else. My mother-in-law and my mother both were diagnosed with the same thing, vascular dementia, but their living situations, support, and the ways they responded to the aphasia and the cognitive effects create two different stories about the disease.

These days, my mother sometimes seems unmoored from the present moment, but not absorbed in memory either–just kind of lost in the ozone. Self, language, memory…sometimes they slip away from her physical body. In this process, though, she has things to teach me. Just as my hospice patients do, and as their families do, by helping me to widen my understanding of human beings and how we get by in the world. Or how we flounder differently from one another. Or how we rescue one another.

Adiamo unmoored photo: Thane Grauel, 2023

I take this gradual loss into myself–that’s what most of us do–and it’s hard, it’s painful to keep myself open to learning and love when what I first notice is untethering and loss. But yesterday when visiting my mother I noticed she has a cobbled-together notebook in which she sometimes writes (in tiny, indecipherable script). Some pages she had divided into three columns, some have scraps of letters or newspaper clippings stapled to them. Are her pages a record, or a practice? She cannot tell me. Yet it was kind of amazing to realize she does this with apparent intent. She has her reasons, if not her reason in the classic sense.

For all that visiting with her generally means a slow amble down the hall or sitting beside her while she sighs, eyes closed, drifting–despite the emptying hours–she is a Self, and she interests me. So I grieve the loss of who-she-has-been and anticipate the sorrow I’ll feel when she dies, but not everything either of us experiences is sadness. Of the poems I have read about losing a beloved person to neurodegenerative conditions, the range in scope covers a vast continuum of human existence, from misery and resentment and sorrow to revelation and even joy. Why would I avoid the full experience life offers?

Constricted

I am forcing myself to write despite my sense that the flow, such as it is, has narrowed. I’m keenly aware that there’s a lot of material beyond the blockage and opening the floodgates may be as unmanageable as the “dry period” is unrewarding. Funny thing about balance. Keeping the seesaw level–no easy task. And as my peers and I progress toward aging, the constriction metaphor applies all too well. Many people I know now walk around with plastic or metal tubes inserted in their interiors to keep vital organs ‘flowing.’ My mother’s brain operates through constricted blood vessels, and now she can barely produce an understandable sentence. My lower back’s accumulating calcium deposits that have narrowed the path my spinal cord takes as it does its daily, necessary work.

Sometimes the flow of anything gets constricted. In our bodies. In the earth’s rivers. In our cities and houses: clogging and backups, plumbing and traffic. We implant stents, dig culverts, widen highways, remove the blockage–once we have determined where it is. There’s the challenge. Where is the rub that keeps us from our dreams? (Hamlet couldn’t figure it out, either).

Normally, I read at least a book a week; lately, just magazine articles, or no reading at all. Very strange for me–and I wonder whether my lack of motivation for reading and my current “dry spell” hinge on sorrow. My workplace has been busy lately, lots of scheduling, many meetings and decisions, not much time for personal reflection. It becomes natural, easy, to do the work of routine and ignore the kind of creative effort that grief requires. In my case, there’s also speculative grief: I know my mother’s dying little by little. We who love her spend as much time as we can with her, lifting our own spirits whenever our visits or gifts of chocolate and flowers and dinners out make her happy. What does she love? Fresh strawberries, for example. I bring them from my garden. She savors them. My day is made.

But I come home sad.

vessels, unconstricted

~

I wrote to a friend recently:

My writing practice has suffered a bit during pandemic but feels also as though underlying changes are in process. Just not much by way of results yet.
Somewhat surprised that my father’s death has affected my practice. Or perhaps it is my mother’s aphasia, frailty, and impending death that’s at work here. Or maybe just the stress of trying to maintain my job and relationships with colleagues and students under pandemic protocols, which has not been easy.
My brain’s been stuffed with things like learning new technology and teaching practices, and that leaves less room for wandering and interconnections and daydreaming. And then I have less energy for the creative work, as well. The garden’s been good, though. I’m not discontented, just feeling the currents of interweaving changes.

~
I suppose those interweaving changes may be a bit knotted, if they are threads, or partially dammed, if they are streams. Maybe why that’s the case does not matter much. What matters more is how to proceed when it seems nothing’s forthcoming–patience, force, ritual, practice, or…change.

You can judge your age by the amount of pain you feel when you come in contact with a new idea.

Pearl S. Buck

Wry words from Ms. Buck. Meanwhile, where are those new ideas? Maybe I just don’t feel up to unblocking the flow just yet. A little apprehensive about the pain.