Twenty-one years … 9-11

My skyline remains empty.

My New York a place adrift in new sorrows.

And yet in this time our 21-year-olds have come of age. Have toasted their newness and sense of unencumbered power to take their place among us. To be with their friends. To work. To live lives of hopes and dreams. To fete with laughter and joy under shadows that may not enshroud their light, but exist in our imaginations.

The silhouettes of grace of an early morning sky on a lovely September day live in us as a before time. Shattering our ease and our comfort and our very sense of ourselves. Our grief remaining as a silent wound. Sometimes stirring our hearts. Sometimes our anger. Sometimes the foundations of our faith in the meaning of our past and our future as we rage and cry out and long for the relief of something greater than ourselves.

I miss my sky and its grittiness, emblazoning a sense of future in the form of two towering buildings that thrust into the sky to light up the night and the mist. To symbolize something crazy and unique in its time and place.

And perhaps that’s the real lesson for us all.

That in its failure to endure we have had to reinvent ourselves. Toasting along with our newly minted generation of adults a redemption of sorts, one that assures us that life goes on.

 

Of caregiving and caregivers

I will admit the notion of bringing in a companion / caregiver had been and still is daunting. As seemingly social as I may be, the die-hard New Yorker in me is loathe with a capital “L” to expose myself. After all, generations of New Yorkers have lived in tiny overstuffed apartments with doors that never open more than a few inches when someone knocks on the door. Why else constantly live life in cafes, bars, and restaurants? Right? We can just as easily have “at-home” dinner parties, but seem to prefer keeping our real selves, messy desks, unmade beds, and all, to our selves. It’s how we roll, and how we live, and our preferred state with out prying eyes and the “tsk, tsk, tsk” of disapproval. Of course, once one has kids, the calculus changes a bit. The living room, kitchen and bathroom do become public as well as any rooms where kids sleep and play. But one’s own bedroom remains a sanctum free of intrusion.

But really, I am indulging in a tangent, when it’s something closer to my own sense of failure at not being the end-all of caregivers. Admittedly I am much better at it than my housekeeping, but the nagging sense that I am not doing enough does punch through. And yes. It’s ridiculous, but who ever said that being human is anything other than a silly state of affairs.

The real truth is, at this stage of unrelenting progression, having a companion caregiver to augment care is absolutely the right call. One cannot be all things and the stimulation provided by another is extremely helpful. Sure, routine is good and important, but so is changing things up a bit. Forcing conversation. Another view of the world. And a new paradigm of routine that includes the companionship of others on a regular basis.

Having crossed that divide some months ago, I’ve come to depend upon the twice-weekly time Jed spends with his companion caregiver. As much for him as for myself, it gives me some relief and the chance to hang the “gone fishing” sign for a few hours.

What I hadn’t prepared for is what happens when that is disrupted whether through illness or other changes. In our case, our caregiver became ill with COVID. She is okay, but was out for three weeks. That change, aside from worrying about her health, also meant that Jed’s world became confused — and truthfully, it set him back a bit.

After my day or two of self-recrimination (hey, see the human thing above), I started reaching out to find some alternates. That in itself has been daunting, but I have been been meeting some fascinating people along this new journey of discovery: the remarkable world of New Yorkers interested in providing friendship to a challenged person.

I’m still talking to folks and setting up meetings to see if things will work out, but what it’s shown me is that in opening up one’s self and yep, even one’s home, bits of magic can form.

Jed’s illness will continue to progress as will his need for care, but what I am finding is that in trusting myself enough to trust others, the caregiving I provide is all the better for it.

 

 

The thing about a good night’s rest

I admit it. More to myself than anyone else. It’s been a long haul lately.

I came back from a week’s writing retreat and boom, whatever demons that had been lurking, engulfed me as so many microbes of infection. Seeping in everywhere at once, I’ve spent days that have morphed into weeks swatting away the no-see-ums of depression, hopelessness, and the nagging sense that I have no where to go. And in between, the daily stuff. Writing. Aiming for vulnerability. Spending time with Jed so that he feels loved, and wanted, and needed, and relevant.

And we’ve been through Jed’s rounds of medical appointments. His latest MRI showing progression, but only a small amount from last year to this year. Of course, adding them up, one year, plus one year, plus one year, and so on means more than a little when counted together. But it only confirmed what I already touch. The new realms of confusion. My own sadness at facing this new normal masked by a determined bravado, but in truth, as palpable as Jed’s “I do not understand” expressions.

Back in my late-30s, I experienced a major depression. Each day was a buzz of activity from my early morning runs on through my exhaustion as I rolled off to sleep having worked till 7:30 or 8:00 at night, and socialized or something else till late in the evening.

In the spaces in between, my eyes would leak tears as I tried to suppress the misery I felt. The aloneness. The despair. All wrapped in the package of not knowing what it meant to be. And how ridiculous I felt at being so late century. So post-modern. So wrapped up in the throws of my existential crisis. Not for a minute allowing myself the truth of it all.

In moments where my guard was down, I could hear my own ironic inner core whispering that the payment was due for an adulthood spent existing without making certain I’d examined all the nooks and crannies of hurt and trauma. For not living the truth of my own existence.

“Not those, again,” I’d decry, while also knowing that my life was as precarious as my sense of being. That I really was tipping over the line a bit, so much so that friends talked and queried, and offered me sanctuary.

So, here now, 30 years later. So much of a brilliant life later, I feel the edges of it. Not that tears leak, or that I despair, but that it is easy to lose sight of one’s reason and place in the world if one remains cut off from living it. From the touchstones that are the little bits of the jigsaw puzzle that is life and has just as much meaning as the larger corner pieces that anchor one’s self to the reality of one’s life.

Yesterday, I woke up having had a brilliant night’s sleep. I was so well rested and in turn felt so refreshed and happy. It’s not necessarily that the no-see-ums had spent their annoying course till next time, but I was reminded that life is this wonderful panoply of joy and fun intermixed with the range of stuff that can sometimes feel like quicksand and at other times like the sweetest of clouds scented by the privet flowers that have permeated the air in this part of Brooklyn.In other words, it’s just life. A moment’s blip in the scheme of things. And truly, nothing like a good, restful night’s sleep to bring on the brilliance again.

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A reminder that caregivers can face special challenges–and that you are never alone. Here are a few resources:

Alzheimer support for caregivers

AFTD caregiver support

Caregiver.org caregiving and depression

 

 

Katie, Amanda, Lady Tyger, and Me

Author, Malissa Smith with Hall of Fame, women’s boxing trailblazer, Marian “Lady Tyger” Trimiar, Madison Square Garden, Taylor/Serrano Main Event, April 30, 2022.

It’s already May. The boxing ring dismantled, the people who filled the Madison Square Garden arena already home or having taken a few extra days in New York City readying to go.

And yet, the enormity of being surrounded by and among a sold-out crowd of nearly 20,000 people; on their feet, cheering, crying, and cheering some more for Katie Taylor and Amanda Serrano both, reverberates. A crowd so loud the veteran Canadian referee, Michael Griffin, couldn’t hear the bell at the end of a couple of the rounds, and a few days later said he’d “never felt that kind of electricity.”

Katie Taylor and Amanda Serrano fought the fight of their lives.

They fought for themselves, for boxing, for women, for little girls and little boys, for their families, for history, for the record setting, 1.5 million eyes who viewed it on the DAZN streaming platform, and all of us who could make it to that arena.

And we felt it.

I felt it.

Jolted through with the special juice that is an event that transcends its time and place. Becomes already immortal. Engrained in our consciousness. Where we view over and over the special magic of the tender smile that passed between Katie and Amanda just before they fought. Taking in the enormity of what they were about to achieve. A history making main event prize fight between two of the best boxers in the world–who because they happened to be girls meant the special sauce of a well-matched contest, was also infused with all the opportunities that had been denied in the past. With fights relegated to the unstreamed portions of fight cards, for little money, and far, far less than equal treatment.

In a world where gender defines and sets rules for how we live and what our agency is as women, boxing has proved itself to be the perfect medium for amplifying those inequities.

Sitting in the stands with the great trailblazing, International Boxing Hall of Fame inductee, Marian “Lady Tyger” Trimiar, it was not lost on me that her achievements and fights for equity were not unlike those of the fictional character, Don Quixote, jousting with windmills.

Her hunger strike in 1987 to protest the inequities towards women in boxing, a grand and beautiful stand for something, caused a ripple or two, but was largely forgotten.

A life time later, sitting in a majestic box above the Madison Square arena festooned with green light, she smiled, and with a wistful tone to her voice, said, “One million dollars for each fighter. I never earned much more than a thousand dollars, and that was for a title fight.”

If we measure equity in dollars and cents, women essentially earn the equivalent of a nightly bar bill of the Mayweather’s of the world.

Even the Taylor/Serrano fight, which passed the crucible of a minimum of a million for each fighter, an absolute first, still seems paltry in the scheme of things. Think about it. Two top-three pound-for-pound fighters duking it out in the ring together, what should that be worth?

Having had the honor to write about the women who’ve donned the gloves to contest in a sport that breaks their heart, watching Katie and Amanda fight with every ounce of their beings was among the most compelling evenings of my life. Here were two warriors of heart and spirit, meeting their moment of greatness, with power, with fortitude, and with grace.

Would that each of us could achieve an equivalent transcendent magnificence.

[Note: a version of this article was published in the Women’s Fight News eZine, April 2022 edition]

Girl Alone

Girl on the block alone.

One friend.

One brother.

I want to be a superhero. Really, ever since I was seven.

Share it with Milton Spivey. Trade stories.

He is cool because his letter to the editor is published in an issue of Spiderman.

Girl alone on 12th Street.

I love to read. To understand the world at large.

I sneak passages in my mother’s paperback copy of William L. Shirer’s “The Rise and Fall of the Third Reich.” The pages thin, already starting to yellow, with that old paperback smell even though it is fairly new.

Love that I know his full name. The importance the author places on it.

I read about concentration camps and the number of Jews murdered from this and that European country. Some in the hundreds of thousands. Some in the millions. Going back to the table listing the number of deaths over and over again.

She keeps hiding the book and I keep finding it.

She needn’t worry. I already know the world is mad. Have known since I was five and learned about Hiroshima and Nagasaki.

I am forever scorched.

Trying to imagine my superhero self, going back in time to smash the crematoria. To get the Jews out from behind the German lines. To make the shadows of the disappeared in the ruins of Japan come back to life again.

Girl alone.

I listen to Mom’s Coltrane, and my Chopin, and my Songs of the Negev on the portable record player Grandma gave me.

“I could be a soldier there,” I think, “the equal to everyone.”

Know that of anyone I know in the world, it is Grandma who would understand.

Girl alone. Springtime.

I like the silence of my thoughts. The feel of my hair in a plait down my back.

My beige jeans.

Worn-out Hush Puppies with my toes starting to poke out.

Myself. Nine years old.

Going somewhere as swift as the wind.

So much done

Sometimes we all need to remind ourselves that we do a lot — and not so much rest on our laurels as to acknowledge the good work accomplished, with a nice “atta-girl” pat on our own backs.

For caregivers, that is especially essential because we can feel our lives to be nothing more than a Sisyphean task wending its way as so many cycles of frustration and grief.

Successes though, do happen, and should be celebrated!

My big success has been the introducing companion care to Jed. For three hours, two days a week, he meets a lovely lady who hangs out with him. It is a bit rocky at times — because it is kind of hard to get to know someone new in the best of circumstances — but they persevere!

Jed and his companion have chitter-chattered, gone for a walk to our favorite local Pizzeria, tried and failed to do a crossword puzzle and two or three art projects, but through it all, it has given Jed someone new to engage with, no mean feat in the pandemic era, which has enforced isolation.

The other laurel I am allowing myself to take a bow for, is gaining approval for Jed to have in-home physical therapy. Provided by the Visiting Nurse Service of New York, he will have two weekly sessions aimed at helping him regain his physical stamina, muscle tone, and flexibility. And the timing couldn’t be more perfect! With Spring underway, there is no better period to walk about the side-streets and parks of Brooklyn as flowers begin to bloom and bird migrations fill our skies with beautiful sights and sounds.

And finally, Jed had his jab number four yesterday, with the fervent hope that he continues to remain COVID free!

So, yup! Three-cheers to myself for this week’s accomplishments. I’ll take them where I can find them.


The Visiting Nurse Service of New York (VNSNY), is part of a national network of organizations providing home health care services.  A doctor can put in an order for a range of services including, skilled nursing, home health aid, and rehabilitation services.

 

Up before sunrise

 

It’s been a while since I was up before the sunrise.  I’d forgotten how noisy my street is at 5:00 in the morning with trucks making deliveries and buses idling before rush hour begins.

Before I retired, it was the time I had to myself. I’d get up around 5:00, patter around a bit, and then shower and dress for the walk to Gleason’s Gym or on off days, perhaps practice yoga before getting ready to leave for work.

Being up now feels like a holiday. An extra bit of time I hadn’t counted on. So far I’ve been filing away the huge pile of stuff that had obscured the wooden patina of my old pine desk, the one piece I have from my aunt. And yes, grabbing the tax papers I’d missed to send off to my accountant who is still doing taxes remotely.

The new cat, Sugar Ray, is not quite certain what to do. So far, he’s pretty much been letting me sleep until at least 8:00 am. He was certainly happy to be fed earlier and has been sleepily following me from room to room as I’ve been filing things away. And as is his way, now that I’m at my desk, he’s back at his perch on the window sill watching the early morning traffic go by. My perfect little sentry who has thankfully found something more interesting than my laptop.

As if on queue, with the perceptible lightening of the sky, I can hear the first faint sounds of bird song above the din of traffic noises. The sounds floating in on the top register as little bits of sweet chirping. Locating my city dwelling space within the urban landscape of life that flows in and around us if we bother to look.

Soon the birds will fly by as ephemeral whisks of light. Fleeting glimmers frozen in memory as something to delight. And so it goes.

Another week

Sugar Ray in the afternoon

Is it a week already since my last post?  What a blur.

I went to Gleason’s Gym on Monday and Thursday. Even added crunches in the sit-up chair at the end my workout. I felt a sense of accomplishment. The reminder of what a touchstone the gym has been and how much I miss it when I don’t go on a regular basis. The moments of self-care so revitalizing to my sense of well being.

The emotional rollercoaster has been moving forward to find part-time companion care for Jed.

I feel he needs an interesting someone to have contact with for a few hours a couple of days a week. Someone who isn’t me and who won’t invoke feelings of being infantilized from time to time. Still it gives me such an overwhelming sense of responsibility as I make decisions on his behalf. I admit that it is tangled up with my sense of helplessness and failure. And yes, I know I do not have the power to fill in the missing spaces in his brain. Or unknot the tau protein clotted ends of his neuron cell axon terminals that can no longer communicate. And no, me beating myself doesn’t help either, but the feelings are there for me to work through.

Meanwhile, plowing forward, I made a connection with an organization that specializes in matching folks up and will have a first preliminary meeting this coming Tuesday. The challenge will be figuring out how to introduce the companion caregiver to him so that it will be something that he wants to do. We shall see, but I have the hope that once we get past the introductory phase, it will help Jed engage more. And maybe even pry him outside when the weather eases up a bit more.

And so it goes.

In the pocket …

Between Covid, cold weather, and the vicissitudes of life, I admit to a rather scattered boxing training schedule since the beginning of the year. Last week, though, I was determined to get back to two days a week with a view towards three as soon as I feel able.

Unstructured training has its place I guess, but for me it’s meant a backward slide when it comes to stamina with a capital “S.”  The twinges in my right shoulder by about my 10th round also reminded me that such breaks can effect muscles and tendons as well. And in case you were wondering, nope, I didn’t pay particular attention to stretching either!

Hmm. Note to self. STRETCH!

Still, tiredness and heavy breathing aside, it felt great to dance around the ring when I shadowboxed, and by the third round on the pads with my trainer, Lennox Blackmoore, I felt in the pocket.

“Good job,” he said with a laugh and a mock wince, when I executed a straight right, as directed to his body, followed by a left.

He also had me working on my up-jab, overhand right combinations, with a sneaky left hook or upper cut thrown in at the end.

On the double-end bag, twinges to the right shoulder aside, I worked on feints and combinations, and the accompanying foot work that had me taking steps first one way and then the other, before executing right hand leads or doubled up jabs followed by the straight right.

Saving the best for last, I completed four rounds on the speed bag for the first time in a couple of months.

Always, my favorite way to finish training, it felt as if I was back hanging with an old friend, alternating my standard da-da-da-da-da-da speed bag drills with thirty second spurts of shots to the bag in combinations.

Given where we are in the world, I also felt humbled by being in the gym at all, as if I were a stand-in for all the people whose circumstance precludes such luxuries.

I was in my home away from home. Practicing what I love. Being in the moment with it. Feeling so much that just by being there I was doing honor to my boxing brothers and sisters in harm’s way in Ukraine. And I felt a gathering in. A welling of love and support as if the energy itself would heal the parts of my body in pain and in turn across the world. Magical thinking to be sure, but there’s a part of me that wants to believe.

 

At the dentist

 

One of the issues caregivers face is ensuring proper dental hygiene for their loved ones. As memory slips, so does the concept of the kind of routines we take for granted as part of our normal day. The wakeup, hit the bathroom, shower, shave (if needed), floss, brush teeth, et al., becomes an illusive construct. The end of day wind down is the same. A foreign movie without benefit of subtitles.

“What? Brush my teeth, you’re so bossy!”

Caregivers know it hits straight into the dilemma of an individual’s sense of self and autonomy in the midst of an on-going memory meltdown.

At the dentist last week for Jed’s six-month check-up, we ran into the issue of dental hygiene. I’d warned our dentist on the phone when I made the appointment so she was prepared. What struck me though, was her incredible gentleness as she cleaned his teeth even as she used quite a lot more rigor than usual.

Sitting outside, I felt by turns sadness for what he was going through, guilt for not having implemented the secret sauce for twice daily brushing, and a sense of being beholden to her for her kindness.

“You’re doing good, Mr. Stevenson,” she said. “I’m so proud of you. I know this is hard.”

Jed didn’t complain and then in speaking with us afterwards she said, “Mr. Stevenson, I do need you to brush your teeth twice a day. And your wife, Malissa, is going to get you a special new toothbrush. It will be a lot of fun.”

One new Philips Sonic electric toothbrush plus a special new heavy duty prescription floride toothpaste later, we headed back to the dentist this week for a followup appointment to top off a filling that had come loose.

Sitting in the waiting room, I observed again the kindness the dentist showed Jed.

“Did you use your new Philips Sonic toothbrush today, Mr. Stevenson?”

He didn’t quite respond, and then taking a look inside his mouth said, “ah, it looks as if you did. Very good, Mr. Stevenson. That is wonderful. Keep up the good work.”

Yes, she was speaking to him like a six year old, but her manner had a sweetness, that disarmed his sense of violation at being told what to do.

What I felt was beholden to her. In what can seem like an indifferent world, her tenderness touched me deeply. I tear up now thinking of it. Just calling him Mr. Stevenson gave him an agency that was powerful.

Reflecting on it, I realized that it also gave me the sense that I wasn’t alone.

For further information on dental care for dementia patients, the Alzheimer’s Association has a very good primer, the link is here: Dental Care.

Aging Care also has some good suggestions: Oral Care Tips for Dementia Caregivers.

As always, please feel free to contact me if you need help with caregiving.

 

 

 

Where does time go

Getting ready to speak about procurement opportunities for M/WBEs and small business owners at the New York Build 2020 Expo, March 3, 2020, Javits Center,

The one year anniversary of my retirement is coming up at the end of February. Not that I’m *that* old, but it was time to hang up my shingle so to speak from working for the City of New York in a variety of administrative procurement leadership roles. What you say? Procurement? A civil servant?  I know. Perhaps a bit incongruous from my boxing and writing life, but, hey, bills had to be paid, and I have to say, I never felt prouder of any profession than my years with the City.

With the retirement anniversary looming, I’m trying to figure out what exactly this year has wrought, other than figuring out pension filings, social security, medicare, and all of the other pensioner-life experiences that have been by turns frustrating and surprisingly easy.

I admit that I didn’t have a plan, per se. It was just time to move on and of course, Jed’s struggles were certainly foremost in my mind. The pandemic also played a role. As I ponder its meaning, I own to having been caught up in the sociological phenomenon of the The Great Resignation.

Looking at time through the prism of retirement has brought me to the realization that I live mostly outside of industrial constructs of time. No. I don’t need to get up at 6:15 AM in the morning for an 8:00 AM start to the day. Or go to bed by 11:00 PM. Or live by endless meetings on a calendar, or deadline dates for this or that report.

Time is my own. My own waking and napping and sleeping. And much as a spoon embracing another, I meld myself to Jed’s time. To having breakfast, and pills out to swallow, and coffee made. But even in that, there is no have-to. Just that it’s there within a window that is morning, as distinguished from later in the day.

Feeding the cat is kind of the same. Our new guy, Sugar Ray, waits patiently. Just needs my attention once I stroll into the kitchen area to set up his morning can of something tasty. And of course some pets and a bit of play, but no alarm needed.

I think it was late June before I grasped that I didn’t have to do anything. That my rigid plans for execution of this or that set of chores was no longer necessary. Rather, I could sit with a coffee and watch the plants. Watch the way the clouds swirled to the left of the Brooklyn Municipal Building (The Ruth Bader Ginsburg Building I should say) as I cock my head to the right looking out the window.

And then the writing started to come.

I’d started Journaling on Saturday, February 27th. By summer it was pretty much every day in some form or another. I journaled, wrote haikus, posts for the blog.

As the summer moved forward, little bits of real writing started to come through.

That practice has nods to time in that I try to set aside segments of the day to write, but even with self-imposed deadlines, there is an ebb and flow to it that seems outside of the world of work. The impositions that trading time and energy for the cold hard reality of a pay check can bring. Those have-to moments, when perhaps you don’t have your heart in it, but have-to anyway. Face getting reprimanded in one form or another for not adhering to the schedule of nine-to-five work and all of its incumbent responsibilities.

I see that most clearly in the changes to relationship. Where folks who formerly worked for me can now be friends. How the static of “boss” has taken some time to unravel. Almost as if we have been collectively taking a hatchet to the fences around us, as so many booby traps to our communicating in any real or meaningful way. This year has brought me the understanding that I can freely roam in my own thoughts and on my own tangents without owing anyone anything. Yes. I get up in the morning, but the clock is internal. And while my writing projects, and such things as the WAAR Room podcast have certain time constraints, each moment seems ripe with possibilities.

My life has become a series of wonderful options and opportunities, and for that I am truly blessed.

Remembering Dr. Martin Luther King Jr. – January 17, 2022

The profundity of Dr. Martin Luther King Jr.’s loss is at times an exponential stain on our nation’s history and national psyche.

Gone is the greatness of his very public intellect and conscience. Yes a leader for civil rights and equity, but also for social justice on the streets of Chicago and Memphis, and in the rice fields of Viet Nam in his calls to withdraw American troops from that theater of war.

Can we imagine him today? A great prophet of the airways? His verbal prowess on display, a great orator toying with the sophists and cynics who ply the boards of what we now call political discourse as they banter about espousing fascism like the school children they are playing with chemicals they neither understand nor care about until, perhaps, some combination blows up in their faces.

I weep for the ideal of our nation. Yes. After all is said and done a patriot of sorts. Molded by my parents idealism and my father’s turn as a revolutionary. Even with his Marxist-Leninist frame of reference, he believed in the experiment. Said, as Zhou Enlai famously quipped of the French Revolution, that we would find out in a couple of hundred more years whether the democratic ideals of the USA’s founders really meant something, but until then, do what we could to ensure its ultimate success.

Dr. King was in many ways our best hope for that success embodying every ideal even as he despaired at the hopelessness he saw all too acutely. Last year’s entry by Democracy Now gives a flavor of the latter day Dr. King, speaking with passion about the ills of America, and the work needed to heal them.  The lessons still reverberate, would that he were here to be our conscience now.

 

Now what?

Okay. So Covid done and dusted. More or less. Still some dregs left. Like the leavings of coffee. Unpalatable but there to be dealt with.

Coming out of my cave, I walked into the cold temperatures of mid-January. Hurriedly paying monthly bills before due dates (those that aren’t automatically deducted), futzing with the plants that needed attending to, making a Trader Joe’s run, plus the hunt for more cans of grilled Fancy Feast cat food — a challenge as cat food seems to on the list of supply chain problem children.

And me. Still no gym (waiting for the dregs to leave). Trying to catch up on writing projects, which is slow going. Figuring out sleep patterns. Avoiding the heavy duty vacuuming that needs to be done. Chores and more chores interspersed with the things that keep me going.

Waking up to find that its January 13th is also to realize I missed the boat on New Year’s and things like New Year’s resolutions.

That was always such a thing. The short list of must-dos for the following year or at any rate, for the month of January into February, when it all felt so fresh.

List items such as: I will write every morning for 30 minutes, or I will practice yoga from 5:30 AM – 6:00 AM for 40 days, kind of my own personal Lent, if I were actually Catholic, but more to the point, liking the ring to the 40 days part of it. 

The truth is I don’t have the heart for it other than to say I want to wake up without worrying.

And maybe that’s a bit whiny. In fact it is. No mistaking it because I’m living a remarkable life. And what worries do I really have? Sure, Jed’s illness, but we have it covered, more or less. We have a lovely place to live. Food on the table. Medical folks who respond when I call. Pensions and health care and social security and a bit in the bank. Isn’t that enough?

So If I land on anything, it’s to say find joy. Live joy. Be joyful. The alternative is like the dregs … nothing we should have to use to define who and what we are.

Just joy.

 

 

 

 

 

My Covid life …

Pandemic Lockdown, Harry Chapin Park, Brooklyn, NY, March 28, 2020

I first read about the novel corona virus beleaguering Wuhan, China in January 2020. Not to say I was prescient or anything, but I did put in my first N-95 mask order on the 26th of January. Even then they were hard to come by and mostly sold out. So no, I wasn’t the only one that saw the tsunami starting to make its way ashore.

I was just at the forefront of a whole lot of people wanting to keep themselves and their families safe.

By mid-February, in my former role as a NYC agency official, I was in daily COOP meetings, that’s continuity of operations to the uninitiated who did not live or work by acronym.

I’ll add, even before the world first heard of Covid-19, I was the hand-sanitizer “Queen.” My particular division had older staff, many of whom were susceptible to URIs (that’s upper respiratory infections), so we’d instituted an “informal” rule. Everyone had to use hand sanitizer and “Lysol” the crap out of their desks at the end of the day to keep the colds at bay.

Me, I’d taken to wiping down tables, chairs, door handles and the like at the beginning and end of each day, and after each meeting.

The illness though had its own time table no matter our planning, which by March, was just a zero sum game of catch up as the trickle of covid cases started to rise to a crescendo, and we dutifully followed through on the plans to stagger work, et al., especially when our own folks started to get sick before finally shutting down entirely.

I also learned to my chagrin that in one meeting in Mid-March, I had two covid-positive colleagues out of five seated around my cramped meeting table for thirty minutes with the door closed.  But I’d dutifully sprayed and wiped down before an after.

By then, the daily 4:00 PM COOP meetings were by phone and had evolved to a Pandemic Task Force. Not to mention the unexplained absences that were whispered about, with one of our number hospitalized for a few days.

Okay, so we all know the rest. The P-word, pandemic, my beloved New York City a raging inferno of sickness and death. All of us at home, locked-down, trying to work and keep our souls together as the sirens punctuated our days and nights as so many desperate cries of despair.

On my chat groups, the friends groups and family ones, we consoled each as we raged, fearfully counting our numbers to keep us safe, and so filled with dread at the thought that one of us would become ill, while recounting in hushed tones those who had died … and on and on through political upheaval, Black Live Matter rallies and marches; the continued, unrelenting sickness, and all the rest.

A day shy of 23 months from placing my first mask order, I tested positive for Covid-19 on an Abbott BinexNOW home test.

That was 23 months of anxiety, fear, desperately scrambling for vaccinations for me and Jed, more scrambling for booster shots, online purchases of masks and more masks, of gloves and more gloves, of hand sanitizer, even making my own at one point with alcohol prep and aloe vera, Clorox bleach spray, Lysol and equivalent wipes, and all the other measures to keep the plague of illness, societal disorder, and wrenching fear at bay.

I was so shocked by the positive result on the stark card, I took it again. A sustained moment of cognitive dissonance. Me, positive? I’m the sanitizer “Queen.” I’m the masked-lady in blue and green and the colors of this or that masks, the cloth ones neatly washed and filtered and replaced with a regularity that was practically obsessive-compulsive in its features. There were weeks and weeks and weeks where I’d be the only person in a mask. On the streets in the summer of 2021 when we NYC denizens felt a bit of hope. Me in the gym, keeping to my quiet corners, learning how to work out and breathe through a mask in the heat, sometimes replacing mid-stream because I’d sweat through it.

Yes. That me. Now sneezing. Taking to my daughter’s room to isolate. The months of thoughtful prep suddenly crashing through with phone calls and frantic cleaning of surfaces, and setting up of supplies in what would be my isolation tank for ten days.

My angel, Izzi, came the next day to take over caregiving duties for her father and to keep me in soup and oatmeal. By that first day (so counted because the day of testing positive is day zero), I was already feeling sick. Sneezing gave way to a sore throat, and by day two a cough, night time fevers, nausea, and a crushing headache. That didn’t abate for several days and at one point I even needed an inhaler in addition to some migraine tablets for the headache, and steady doses of Mucinex to keep the coughing at bay.

My internist had said since I’d had three jabs it was highly unlikely that I’d need hospitalization or even anti-virals as long as my fever didn’t spike past 102F degrees or my pulse oximeter readings did not go below 92.

In that I was lucky. I’d become ill with the Omicron-variant raging across the world as a wild fire of sudden illness.

My fever never went above 100F, and my infection stayed in my upper respiratory system which meant my breathes ranged from a healthy 95-99 most of the time.

But I was sick. And now at day 12 still have sniffles and the sense that science and a steady dose of exercise saw me through the worst.

Our stringent protocols also kept Jed and Izzi safe as they continue to test negative.

Talking via FaceTime from the room next door.

Jed’s confusion as to where I was and who we all were patiently explained several times a day.

Bullets to our hearts averted.

Still …

The moments I’m not prepared for

Mount Everest, Photo credit: The Tribune, India

Caregiving for a person who is losing themselves is the Mount Everest of experiences. One puts one foot in front of the other for some sort of forward momentum, but without really looking too far ahead. To do so is to risk one’s own break down and that plaintive, wistful, despairing question, “how can I do this?”.

As I ponder it all, I’m realizing the moments I’m not prepared for seems to be a growing list. This morning, Jed asked, “Who are you?” and I really didn’t know where to go from there.

I smiled.

Sweetly.

In the moment.

Said, “I am Malissa,” paused and added “we are married.”

Jed said, “I don’t remember things.”

He then smiled and said, “well Sheila, how are you!”

Now that was typical Jed. A moment of clarity in his fog of a mind, covering his sense of embarrassment at not being on top of things and making a joke of it all. We carried on with the Sheila joke for a bit before focusing on breakfast: a toasted slice of leftover cranberry walnut bread, our Christmas morning family tradition for years. He said, “hmmm, this tastes good, where did you get it?”

I explained, the Christmas morning stuff and he looked at me with wide eyes and a big smile and said, “you made this? It’s delicious.”

And so it went. Through breakfast. Through discussions about haircuts. Showering. the scabs on his arms and upper body from his newly acquired OCD habit of scratching and picking.

And no, none of it is ever something I thought of. I mean, really, who does? At our age, one thinks of the bad luck of cancers or heart aliments, diabetes or COPD from all the smoking we did as kids, but something that slowly erodes one’s ability to think or even recognize or put words to the people they know and love? No. Believe me. You don’t think of it. Not even if it is all around you, never for your own spouse or loved one.

As I write this, we’ve conquered the confusion of waking up and not being able to understand the most basic of things. Slowly though, I am watching as cognition returns. Yes. Morning meds and vitamins. A shower (no fight about it either), shaving using his electric razor, putting on spanking new duds from his Christmas haul. A pet to our kitty Mimi who is on her last legs from chronic liver failure. Sweet words to me about how much he loves me. Appreciates me. More talk about getting a haircut. And then an actual walk, our first in almost two weeks since he accompanied me to the Post Office to pick up stamps.

All went well, but the haircut didn’t happen. We lost the window, too soon when he turned from our apartment house entry way and too late when we passed it on the way home.

Walks are in fact, really tiring both physically and mentally, even our very short ones. He becomes overstimulated by the sights and sounds. People on the street. Noise. Shops. And today from wandering around the first floor of Barnes and Noble, the colors of the fruit stand, the plants and trees lining the brownstones on Clinton Street. And needing to stop as well. The sweat beading on his forehead, needing to catch his breath, this from the man who has circumnavigated Manhattan at night in a kayak by himself and written about it for a Weekend Warrior column in the NY Times.

Once upstairs, he remembered about the haircut. “Maybe tomorrow,” he said. He had to go to bed, to drift for a while in the darkened room with drawn curtains and to eventually asleep.

Meanwhile my day. Yay to getting my delivery of Covid home tests after a pre-Christmas frantic search of medical supply companies on the internet. Yes to laundry, churning its way through rinse cycles and the dryer. Yes to a quick text touchpoint with my daughter. Yes to realizing just how overwhelmed I feel — and to the bits of tears in my eyes as I blink my way through a minute or two of silent meditation to keep myself together for the next steps of the day.

If yesterday morning was self-care at Gleason’s Gym, today, through chores (garbage out, laundry, vacuuming), I’m giving myself the sense of order externally. Sure, not spanking clean, but at least with some of the holiday disorder at bay.

And then I locate myself again. Clear my mind, breathe, inhale, exhale, and start it again. This is the way.

****

For more information about dementia and caregiving resources here are some helpful links in NYC as well as two of the main national organizations. And of course, always feel free to contact me.

CaringKind is a caregiver organization in NYC with remarkable resources, courses, caregiver groups, and other information. Link here: Caring Kind.

NYU Family Support Center has programs for caregivers to include a fully array of “zoom” meetings that range from looking at art with museum curators to music and caregiver “KaffeeKlastch” meetings. Link here:  NYU Family Support Center.

Alzheimer’s Association, website for information and resources for this disease. Link here: Alzheimer’s Association.

The Association for Frontotemperal Degeneration, website for information and resources for this disease. Link here: AFTD