Mom always goes first. She’s spent time — who knows, maybe all week — getting organized for her Saturday Zoom share and needs to get it out there before she loses her train of thought. We are scrupulous in getting right to her once everyone has assembled, relieved that we have landed on a stable structure to support a fun interaction because it could easily go a very different way. It has taken a while for Mom to figure out how she can fit into this weekly pandemic family Zoom meet-up and contribute from her room in The Arbor, the Dirigo Pines memory unit.
But she has. She has found her place. After 25 years of mournfully surrendering one piece of herself after another to Parkinson’s — 25 years of gradually ceding her place at the table as her body disconnected, her mind slowed and aphasia took her words — she has figured out how not only to contribute but take a certain and unprecedented command of the conversation from her personal box in the gallery view screen. Even before Parkinson’s took her over, commanding the conversation was not how it went with Mom in our family of talkers.
But she’s done it. She has done it now with, of all things, bits of trivia gathered from the daily newsletter distributed in The Arbor. She curates the best of the best from the week, then doles it out each Saturday afternoon, often heightening the excitement by dribbling tidbit hints game show – style to get us guessing.
“I have two pieces of trivia today and they both are on animals,” Mom says slowly, holding up 2 fingers very close to the screen. “The first animal is very, very long with a very powerful jaw.” There are many pauses as she gathers her words, but today is a good day and her voice is strong. “It is also very poisonous but it immunizes itself to the poison by circling around and biting itself.”
There couldn’t be better timing for this topical bit of trivia in our COVID 19 vaccine-preoccupied world. Mom and Dad have both gotten theirs, as has Amy, the doctor, but the rest of us are waiting very anxiously. We need worry no more, though, because this “animal” trivia has gotten Mom thinking. She launches into a long ramble about biting. It sounds like she’s saying that now that she’s vaccinated she’s going to be administering bites, though at a certain point something shifts and it seems she’ll only be biting Tommy.
“Are you saying you’re going to bite us to immunize us?” I ask, trying to first establish the basic plan and logic. We often have to piece together the words and extrapolate the thinking behind them.
“But you’re only going to bite Tommy?”
“Why does Tommy get the vaccine?”
Someone shouts out, “First born,” but I don’t care about that and am sick to the death of such priorities. I’m getting tired of constantly having to wait in line. And I’m not going to just roll over about Tommy being the only one to get it.
“But why only Tommy?”
Mom shrugs with the adorable, wide-eyed expression that emerged as the Parkinson’s progressed.
“I don’t know yet if it will work,” she explains.
It’s hard to tell if she’s being serious or goofy. On the one hand, Mom is “an old nurse” as she likes to tell her caregivers at Dirigo (to put them on alert), and so her commitment to science and the due clinical trial protocol to test efficacy (and presumably safety) would be a logical quality measure for a person from the medical field. On the other hand, it’s exactly this sort of crazy reasoning that has made her problematically unreasonable at times and beyond Dad’s ability to care for her.
Crazy or not, this whole discussion has really touched a nerve and I’m not about to back down on the unjust exclusivity of her vaccine distribution plan.
“Well, it’s not fair. Plus, Tommy’s already getting his shot tomorrow.”
This is the point at which Amy shifts the conversation from immunization envy back to animal science.
“Animals were how vaccines were actually discovered in the first place,” Amy says. “They figured it out after the dairy maids who had contracted cowpox from touching the cows’ udders appeared to be immune to small pox. In fact, the word ‘vaccine’ comes from the Latin word ‘vaccinus’ which means ‘of the cow.’”
Wow. We did not know that. With images of dairy maids and cow udders flitting through our heads we circle back around for Mom’s last piece of animal trivia for the day — how American-born parrots only have capacity for 20 words in their little parrot heads while African-born parrots have an impressive 100-word capacity.
What? Why is that? This parrot fact immediately conjures uncomfortable race questions with the most obvious one being, Why are we such dummies here? closely followed by, But why should this come as a suprise? There is so much to reflect upon.
And so it goes, another wild and unexpected ride with Mom on her trivia horse. She has birthed conversations that take us around the globe and back to our childhoods, into the future and through the boundaries of time and space.
Then one Saturday she goes a different route. Instead of leading with a bit of trivia, she asks us to reflect upon trivia itself.
“Is trivia something you hear and forget or is it something that, stringed together, becomes wisdom?” she asks.
This question comes out crystal clear, as if propelled by the force of transcendent clarity, a jolting departure from the usual halting, barely audible sounds of Mom’s voice. As for the content, we’re used to Mom’s sometimes wacky associations but the tonal clarity of her speech and the unexpected philosophical twist on trivia momentarily stuns us into silence.
Then John comes forward.
“Can you say more about that, Mom?”
She can and she does with the same clean, clear flow of language, as if sourced straight from a young babbling brook of sparkling words.
“Trivia is always explained by the person’s perception of that trivia,” Mom says. “When you gather enough of the bits of trivia together it becomes wisdom. For instance, how you color the hand informs your perception. If your perception of the hand on the harp is that it cannot be seen and you want it to be seen then you would color that hand with darker colors to be more visible. Trivia is related to your perception.”
Mom qualifies as having dementia but hers presents in a very off-center way. While her memory is intact and there is no confusion about where she is and what’s going on around her in time and space, her reasoning skews on a wide and somewhat random range of topics. Reason, however, is a hard metric to slice and dice since Mom’s reasoning has always been a little tilted in reflection of her stretched associations and penchant for the metaphorical. She is a creative soul. Luckily, what she is saying about the hand and the harp jolts something in Amy.
“Are you talking about the coloring book I sent you? Did it have a picture of a woman playing a harp?”
“Yes,” says Mom. “If I color her hand in a darker color, then I can bring it forward if the hand is where the meaning is.”
Somehow Amy is able to pull this all together.
“I think I see,” says Amy. “You are processing what’s going on in your life by bringing things together to make meaning. Bringing perception into the equation brings in a different dimension and bringing in the colors helps you with your perception. So you are tying together triva and wisdom and perception and color. Is that right Mom?”
I’m astonished Amy has been able to follow the trail of all that. I’m not astonished, however, that Mom is making something from what she has at hand. Mom is a maker. She spent her life turning textiles into mountains upon mountains of things — anything that could be used to carry things, pull things, cover things, protect things, arrange things, store things, hold things, decorate things, adorn things, honor things, or be worn upon the body or facilitate the play of grandchildren. And when she no longer could see to thread a needle or control her hand to sew a stitch she switched to duct tape to unionize the materials she envisioned in partnership. It’s like she was born with a soul-deep need to bring a piece of this and a length of that together.
Now with nothing left at her disposal except coloring books, crayons, daily bits of trivia and endless hours, she is attempting to make sense of life and her place in it. It is the material she has left to work with.
Despite the fact that these late-in-life materials have form and substance and can be held in the hand, there’s an inwardness to what Mom is working on now, more like the unraveling of a sweater to find the dropped stitch than the picking up of knitting needles and a skein of wool to generate a mountain of product. This inwardness is new for her. But maybe this turning in is not new so much for Mom as it is a re-turning, a returning to a place of origin, of her original self. A calling home.
Or maybe this is just me preparing for that call.
This is beautiful Elizabeth. My sisters and I took care of my mother who had Parkinsons for ten years. It was a long period of discovery and rediscovery of who my mother and I were – as individuals and in our relationship. Difficult chapters in our lives for sure, but without them I would not have the wisdom from those years to guide me and reflect upon today. Your gift of insight and putting in to words of your life’s experiences in a way that pulls this reader to a place of magical inspirational energy never ceases to amaze me.
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Thank you Jeannie. It is such an intense experience to get to know someone on an altered relationship level — including yourself — and see what emerges. It is such a conflict that growth and wisdom appear to only be available through a price of some suffering. I want the growth; I don’t want to pay for it! And yet without it there isn’t much to write about or nearly so much to connect with with other people. It has been a joy to connect with you and I am ever grateful for your encouragement, Jeannie. It means a lot to me.
Lots comes to mind here: a) Your zoom calls have an organized quality to them that the family zooms I’ve joined never have. There are no conversations. Just sentences being blurted out, sometimes on top of one another. b) Your sister seems smart, but you’re probably sick of hearing that. c) The pace of your essay is wonderful. It’s truly a readable piece that educated and entertains and sets my inner turmoil of considering my own family relationships at ease.
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When I got to (b) I laughed my ass off! Yes, indeed, Amy is a smart one. And I have heard this and more over the course of my life because she’s not only smart but she’s beautiful, talented, fun, funny, rational and more, all of which I would resent were she also insufferable. But that is one thing she’s not. I love that you homed right in on that. As for a), b) and c)….let me just say that you comment like the writer you are, going right to the specifics of the story and pulling out what struck you. It’s always so gratifying to know exactly what’s happening in the head of a reader. But back to a). My family is very specific about format and have gotten very comfortable in later years being the nerds that we are. So we conduct our family conversation like a business meeting complete with a facilitator (which happens to be me) to kind of keep things orderly and make sure everyone is heard and also jab people if they are not pulling their weight; all are expected to come with something to share. This might all seem to be overkill and killjoy but in fact it’s turned out to facilitate fun, as counterintuitive as that seems. Not everything gives itself that well to this kind of management. On c). I feel like I scored big on the wonderful/readable/educational/entertaining with the big win being having some kind of positive impact on you in your own experience. Thanks, Jeff. I appreciate your thoughts!
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Hi Elizabeth, you responded to my message instead of Jeannie’s. Wanted to let you know so you could make sure she saw it.
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I don’t like aging much myself. More aware of time running out. Now seems to have happened too fast.
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No, much of aging is not fun. It feels like watching pieces of yourself drop off, like there goes the muffler. Now does seem like it happened too fast. That’s a good way of putting it.
Elizabeth, making me think deeply, again. Thanks for all you do … for each of us, in a unique and personal way. My in-laws visited for Easter. My MiL is 87, has moderate dementia, and struggles to get around with a walker. Her dementia affects her ST memory, so we repeat a lot. However, it doesn’t affect her wisdom. Helping her from the car and to the car, she said to me, “I don’t like getting old. Don’t get old.” I thought about that and the inevitability of aging. And, I thought of how her physical functioning has diminished. How she refuses PT and anyone coming to her house. And, I thought about Tom, our friend in Alaska, who is the same age. He is still climbing glaciers and visiting Patagonia and … Therein, it comes together. I will listen to Rae and avoid getting old, or at least slow it down. Her example of de-conditioning is offset by Tom’s ultimate conditioning. I will listen to her and I will listen to Tom. Her Easter message struck a chord, and I am listening.
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I love the simplicity of direct messages like, “I don’t like getting old. Don’t get old.” I wonder if that’s one of the “gifts” of something like dementia that loosens something up in the brain, unfilters it, uncomplicates it. At any rate, it is hard to reconcile the incredible contrast of experiences we have….how one person is climbing glaciers and the other one is struggling with a walker — and also resisting help. Avoiding getting old is a good plan, all the more powerful when you have that perfect example of contrasts between your friend and your mother-in-law. As always, thanks so much for continuing the conversation and letting me know how my stories play out in your life. You always turn it back to me and make me think!
Oh! I love your mother.
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You get to know more sides of your parents — and people in general — the older and more vulnerable they get. Things come out. A wonderful whackiness came out in Mom that I simply wasn’t that tuned into before when growing up. And a tenacity, an almost animal tenacity, emerged in Mom, as well. She has a grip on life that is almost breathtaking. Well, what’s also breathtaking — most breathtaking — is how ferociously she needs to make things. That has been an astonishment. Thanks for loving my mom, Kristy!