Time is on My Side

We know that stress exacerbates your symptoms. Whatever is happening to you, whatever horrible, no good, very bad thing is happening to you, stress will ultimately make it worse.

My last rheumy visit in July came after a two-month sojourn to care for my one-year-old granddaughter. I expected my lab numbers to be off the charts; after all, running after a toddler is a thing for the young, not the young at heart.

I loved spending time with her and now miss her terribly, but I won’t sugarcoat the fact that I sometimes felt I needed a crane to lift me out of bed in the morning. It had been thirteen years since I’d had to put in twelve-hour-plus days, and never five days a week.

But love got me through. And though, I was happy to have this time with her, I knew I needed to be home as well. Two months was a long stretch to be gone and a lot was happening at home during that time. Each day I crossed off one more date on my calendar, tallying up the days spent with my precious baby, and then immediately counted the days remaining before I could go home. I went from exultant to torn within 30 seconds.

I figured that between the physicality of my days and the emotional tug of war, my inflammation markers would be off the charts. Imagine my surprise to learn that I’d sailed through that tumultuous ocean of stress with nary a splash on me.

At least, a medically documented splash. My calendar is full of micro notes as to what was happening to my body during that May and June. The aches and pains that came and went at their whim. One definite flare that thankfully disappeared within a couple of days. Regardless, I presented so well at my July visit that he pushed my next visit up three months, instead of the usual two.

Well. Those next three months saw even more ups and down. Physical and emotional. And again I wondered, will my labs reflect that? Will they be a tell-tale sign of sciatica pain, shingles pain (still with me on and off), and the pain felt over the loss of my father-in-law less than three months after the loss of my mother-in-law? Will they snitch on the occasional joint pain and point to the now persistently inflamed and sometimes useless left wrist?

Apparently not. At yesterday’s visit I learned my CRP is elevated just barely enough so that it can be called “high.” My Sed rate is normal, as it is 99% of the time. Those are the two markers I pay attention to as they reflect the amount of inflammation in my body, which in turn explains the pain and stiffness I feel. Or should explain.

Two weeks ago, I’d gone to see my PCP about the wrist as it was going on a month. He put me on Naproxen twice a day for ten days. I didn’t do it, of course. I took it once daily. I did do a Prednisone hit. That helped a little.

Now my rheumy said to me, “We have four choices. Do you know what they are?”

“Wait,” I said.

He nodded. Time heals.

I waited and he recited the other three choices using his fingers to count them off. “Increase the Methotrexate. Start Corticosteroids. Start a biologic.”

“No,” I said. “No biologic. I’m not ready to make that leap.” My right hand made a leaping motion and landed on its side on the desk between us. “I’ve used Humira,” I said, “and all it did was make me go broke.”

“OK.” He went back to the drawing board (his laptop) and came up with a plan. “We’ll go up to ten (pills) of Methotrexate (max of 25 mg). We’ll do the steroids. Injection or oral?”

“Oral.” He’s offered the shots so many times and I always politely decline.

“And we’ll do Naproxen.” That again!

So we formulated a three-point plan to regain my left wrist. That was twenty-four hours ago and wouldn’t you know it, today the swelling is down and it barely hurts. All this tells me one thing: Ti-i-i-i-ime is on my side.

Yes, it is.

 

 

 

 

 

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A Pair of Wings

So I donned a pair of wings
once more
Before,
it was to say hello
This time,
it was to say goodbye

~~~

This past year or so I’ve seen the inside of more airplanes than I probably have in the past 20 years.  August’s trip to Los Angeles was to attend my father-in-law’s 84th birthday. We all knew, including him, that it would probably be his last.

He’d come close the previous June, so close we rushed to his side, fearful that we might not make it in time.  He was so sick then, I doubted he would see his 83rd. But he rallied after chemo was stopped and he was placed in hospice. This gave him not just an extra year, but a quality extra year.

A very good year capped off by the gift of one more birthday. His eldest daughter arranged to hold the celebration in a Mexican restaurant on Pacific Coast Highway. Ortega 120, where you can find “heart felt Mexican cooking.” Its rustic decor made you feel at ease immediately upon entering. And its theme of Dia de los Muertos seemed to coalesce with the religious artworks displayed. Death and hope rolled into one.

My husband led me around the restaurant where we were awed by the hundreds of artworks displayed, murals and ceiling paintings, the Mexican culture that we could both only imagine. I wanted to buy everything, but the pieces I truly wanted were not for sale.

It was a wonderful gathering, the reserved patio filled to capacity with extended family that I hadn’t even heard of. All there to wish Don Alfredo one more happy birthday.

The day before the funeral, my husband’s two sisters were debating where best to take us to lunch. While driving around in search of a place, they remembered Ortega 120. When we arrived, we were shown to the exact same table where we had sat the month before, with my husband ending up in the seat his father had occupied then. We were all struck dumb for a moment as the realization hit us. We’d been taken there, by Al.

The service was held in a wondrous chapel at the top of a sloping hill. From this height, the breathtaking expanse of Al’s beloved downtown Los Angeles lay below us.

My feeble attempt to capture Skyrose Chapel as my husband is walking out alone.

My feeble attempt to capture Skyrose Chapel as my husband is walking out alone.

Again, the venue was filled to capacity, as was the reception later. I was presented to and approached by numerous family members who became a flurry of names to me. We lost track of how many young people came up to tell us how Al had made a positive impact on their lives. Many went up to the microphone to recite stories about him.

There were many peals of laughter as story after story was told. Though few were able to get through their stories without stopping to wipe away tears. The one story that I think sums up my father-in-law and his self-deprecating humor is the one his good  friend recounted. He’d gone to visit Al on a day when he seemed pensive and this is what he said:

“I’ve been supposed to die for several years and yet here I am. So I asked God, why am I still here?”

“And what did God tell you?” his friend asked.

“He said, Al, you just have to wait. There’s too many Mexicans in heaven.”

~~~

Enjoying the sunset in Redondo Beach, California

Enjoying the sunset in Redondo Beach, California

sunsetsunset

My youngest who is traveling in Costa Rica made this token for her grandfather. She used "half of a rotting coconut to symbolize death, a rock washed up on the beach to represent the earth, a piece of palm to represent our family and home, and a flower for life." And then she sent it out sea.

My youngest, who was traveling in Costa Rica, made this token for her grandfather. She used “half of a rotting coconut to symbolize death, a rock washed up on the beach to represent the earth, a piece of palm to represent our family and home, and a flower for life.” And then she sent it out to sea.

Staff Sgt. Alfredo Navarro has answered his final call to duty.

Staff Sgt. Alfredo Navarro has answered his final call to duty.

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Sigh-

-atica.

The beast has been tamed. Though not altogether vanquished, its growls have been reduced to whimpers.

I had a total of four physical therapy sessions that boiled downed to learning some exercises to strengthen the muscles of my legs and limit pressure on the sciatic nerve itself. They all happened before I flew to Los Angeles exactly three weeks ago, a five-hour plane ride that I was dreading, and which dread spurred me to hurry up and do something!

The flights were not fun, there and back, but were thankfully direct so were over and done with as quickly as humanly possible. Aisle seats helped a lot as I didn’t have to maneuver that tiny space between seat rows.

Sitting hurt, but standing up hurt worse. At least, for that first step or two. I managed to get through the four days we were there fairly well. The ache a dull roar down my leg. But I’m very glad we went because we got to see my father-in-law in good spirits, and albeit with a cane, walking better than I was.

I held off taking Prednisone during the trip, but after flying back on a redeye, and with the three-hour time difference, the jet lag threatened to bury me. So I caved and did a six-day hit (20, 20, 10, 10, 5, 5 mg). That did the trick and also soothed away the egregious pain, for the most part.

I remain quite conscious of that leg, or that nerve, I should say. I turn over in bed with great caution. The wrong move sent an electrifying jolt down my leg and left a painful residue behind. For hours and sometimes for the whole rest of the day or night.

I’m careful not to sit too long either, which kind of puts a kink in the works since I work sitting down. I keep hearing my PCP’s admonition as he scribbled away on his Rx pad, “Don’t sit!”

This has also put my home downsizing project on hold. No more climbing the stepladder, no more lifting heavy books, no more pushing furniture around. Now I look at our record collection longingly. Yes, vinyl records, about 200 or more taking up space. They need to go into another room where I can’t see them anymore, as I’m not allowed to get rid of them. I guess I could carry them there one by one. Two by two.

Since I couldn’t sit and I couldn’t lift, I turned to culling my photo collection, and framing some of my more treasured moments. This fun trip down my personal memory lane was facilitated by using my cutting table as a work area. It’s high enough that I can stand and cut out countless quilt pieces without incurring miserable lower back pain.

I have not returned to PT, though they’ve been calling me. I don’t see the need. I should probably tell them that. I think I derived enough from those sessions to basically practice prophylaxis and prevent another attack of sciatica in future.

Still, I thought more info wouldn’t hurt so I bought a book last night. It’s written by a sciatica sufferer and at a whopping $4.99 for an eBook, I expected a lot more than I got. True, clinically, I realized I would know quite a bit, but at the very least I expected something that couldn’t be read in one sitting. What was even more disappointing is that it could have used some editing and a whole lot of proofreading. It feels like I threw my money away, but I guess, caveat emptor.

Though my screaming leg has shushed, I remain vigilant. And for now on standby, with a bag mentally packed. We have received word that my father-in-law is failing. He has battled multiple myeloma for several years and it appears his time is near.

graduation

Big Al with us at my husband’s graduation from Texas A&M Maritime Academy. A long, long time ago. 

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A Terminal Case of Butterfingers

No, I don’t mean the candy bar. Though I haven’t had one in about a thousand years (Ok, I exaggerate), I can still savor the crumbly, peanut-buttery taste that slowly dissolves in your mouth. Unless you crunch down and chew it away quickly. And who wants that?

I refer to actual fingers. Mine, to be exact. And I suppose those of many others who deal with some form of arthritis. In my case, both osteoarthritis and rheumatoid arthritis.

OA comes from wear and tear. And after thirty years of mostly bedside nursing, raising children, and keeping house my hands are worn and torn. Not visually, mind you. Visually, they’ve held up pretty well.

But inside, oh, inside they hide the impact of their hard work.

Now RA comes uninvited. Unbidden, as I referred to it in one of my poems. I’m not sure when mine came knocking, but it was formally introduced to me in 2004. Ten years this relationship has lasted. Ten official years of living together.

The first thing I noticed, the first physical thing, other than a generalized malaise and lethargy, was the declining agility and flexibility of my hands. They seemed to be stuffed with cotton. Or stuffed in several layers of mittens. Mittens, not gloves.

Suddenly, the people behind me at the grocery check-out line had to wait patiently while my clumsy fingers dug out small coins from my wallet. Even the bills seemed to be stuck together in a way they’d never been before. I’d always paid cash with the correct change for my groceries. Something my father taught me, I suppose.

No one said anything, but I could feel the eyes on me as they waited. And waited. I began to feel self-conscious about it and that made the going even slower. My heart beat at a higher rate as my turn approached to lay my things on the conveyor belt.

It’s silly, isn’t it? To worry about being able to dig money out of your wallet fast enough. But that wasn’t the only thing my seemingly thickened, somewhat petrified fingers affected.

The sewing needle seemed to have disappeared. It’s girth reduced to nothingness. I could see it, but picking it up and holding it was another matter. It was a minute, slippery, slithery snake that I could barely control.

Along came steroids (Prednisone), and with that a new day dawned. Or maybe an old day, when I had full control of my fingers, when they were dexterous once again. And, painless.

I have had many years on steroids, and many years off steroids. Off is better. Better for your overall health. On is better for your fluidity of movement. Though it is an artificial suppleness.

Currently, I’m off. And plan to stay that way. At least, 90% of the time. With RA you learn there is a lot of give and take. And if you don’t give, it will take.

I have come to accept that I will henceforth live with a terminal case of butterfingers. At this point, a slight degree of painless butterfingers. One that does not stop me from doing anything I want to do. From writing to typing, from cooking to hand sewing, from housecleaning to holding an actual book in my hands. From caressing the lovely little faces of my granddaughters to whipping out the credit card to buy them things.

And speaking of the art of buying, we’re going shopping today. I think I will pick me up a bit of that crumbly, peanut-buttery escape.

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Essay Writer

I’m packing again. Seems I just got home and here my name is on another plane ticket.

At least my sciatica flare-up is calming down just in time for that five-hour butt-in-seat marathon. It mostly hurts when I do pelvic lifts, so maybe I won’t do them.

Unfortunately, my physical therapist has other ideas. She makes me do thirty of them and hold them for a count of five. To strengthen my lower back and hips, she says.

OK, then.

I tell her it feels as though someone is stabbing me with a knife right in the gluteus maximus every time my behind goes airborne. “Just go as high as you can then,” she says.

So understanding, she is.

Today she had me start on the stationary bike. During the last session, while lying on my side on the table doing leg lifts (she’s big on the lifting) my eyes lit upon the bike parked right next to me. And as I lifted my bent knee toward the ceiling, without letting my hips rotate with the movement and holding my tummy in, I started to drool.

bike

Oh, I wanted that.

As soon as I was done, and before she could say, “Let’s do the standing leg lifts,” I moved toward the bike. “You like that?” she asked.

“Yes,” I said as I slipped my left foot onto the pedal and swung my other leg over the seat. “Let me just see how it feels.”

“Oh, yes,” I breathed as soon as my tush hit the seat. Automatically, my feet began pedaling, telegraphing the message they weren’t going to stop any time soon.

“Do six minutes and then you’re done,” she said, caving.

It sure beat standing at the counter lifting my leg sideways and then backwards for three rounds of ten each.

Today I got out of doing them as well.

“Since you liked the bike so much last time, we’ll start on it,” she said the minute I came in. “Ten minutes.”

I climbed on happily. Oh, yes. I definitely like!

We’re shopping around for this bike since I hate the one I have and rarely use it. I miss my old one, which was similar to this one, but I broke the poor thing. This one is off the charts in price so I will have to do some more copyediting work, write/edit some more essays to help pay for it. And I will, soon as I can sit for long periods again.

Lift, one, two, three . . .

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Digging For Joy

So, I’ve been home for over three weeks. My zest for cleaning out my nest is unfaltering. Seems like an addiction. I can’t stop myself. Twenty-six years in one place will result in an accumulation of unmentionables, and I don’t mean those kind of unmentionables. More like: What was I thinking when I bought this. Quick! Into the trash before someone sees it!

Closets that I considered too small for anything are springing forth a surprising amount of things. It’s not quite the ubiquitous movie scene where a character opens a closet door and is immediately buried in stuff, but close. Where did I find the time? Not only to collect all this stuff, but to store it. So neatly even.

It’s like I’m peeking into someone else’s life. And in a way, I guess I am. That me barely exists anymore.

That me was busy, night and day, raising kids, holding down a job, running a full house. I didn’t have time to be sick. When RA came knocking, I ignored it, who knows for how long? I had no time, no room in my consciousness for me, for my goals, for my dreams.

So much has changed. And the trip down memory lane as I was cleaning out my younger daughter’s room was bittersweet. Six years after she moved out, I accept the fact that she has moved out. But I’m happy she “takes” me with her on her adventures around the world. I’m her editor, copyeditor and proofreader. She has to take me!

The room will now be strictly her dad’s office/bike room. The wall of shelving in her room yielded all kinds of memories, plus toys and books that I will donate. One thing those shelves held was a mother lode of Barbies. Twenty, if I counted correctly, all in their original boxes, untouched. I doubt she has any use for them now. I will ask, but I think I can safely assume that my granddaughters will end up sharing this booty.

I will give the dolls to them slowly, gradually, over several years so that I can stretch out the joy. I picked one out already for the four-year-old, who’s in her Disney Princess phase. I placed it in “her” room, waiting for her next visit.

Barbie doll

And what else have I found during my epic housecleaning? A bout of sciatica. Though it rarely bothers me, I developed it thirty years ago while having my older daughter. It landed me on bed rest at seven months into the pregnancy. The irony: she was my tiniest baby, five pounds seven ounces.

By contrast, my younger daughter weighed exactly the opposite, seven pounds, five ounces. And though I feared being left crippled by another pregnancy, having her was a breeze. I even got my first epidural, ever. Wow! What a difference a little needle makes.

So now I’m on a Medrol Pak, more steroids! And tomorrow I start some physical therapy. I’m not down or out, mind you. Just inconvenienced. After a two-day rest, my cleaning goes on at a slower pace. No more heavy lifting, and the hopping on and off the stepladder has been temporarily suspended.

What’s prompting the physical therapy is that in less than two weeks I will be sitting on a plane for five plus hours on my way to Los Angeles. Ouch!

 

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Escape From MS and Other Sundries

I apologize for my long absence, but I made it home, yay! My return came in a roundabout way as my SO (significant other) booked a July 4th weekend stay in merry Coconut Grove.

Coconut Grove

View from our 19th floor balcony.

The eighth floor pool area gave us uninterrupted access to the sight of hours of brilliant fireworks, an awesome production that went on and on and on to the delight of my four-year-old granddaughter. It was a great re-bonding experience with my family and proved to be a nice buffer between there and here. Here being the place where you easily trip and fall into a rut.

I’d never been gone from home for two whole months before and it proved difficult for everyone. Even though it saddened me to think that I wouldn’t see my precious Carmen every day anymore, I longed for home. I dreamed of home.

My Lovely. I shall see her again on Thanksgiving.

My Lovely. I shall see her again on Thanksgiving.

And while my plane landed on a Thursday, I didn’t truly make it home till Monday. I walked in the door with resolve, and with what I call a late onset attack of spring cleaning. It’s an incredible catharsis to throw away stuff that’s been sitting in your house taking up space for a quarter century.

Rut begone. This is a new era. A new era of organization and production. I’m back to my writing and freelance editing. My finger is off the pause button.

***I had my rheumy check-up a few days ago. All labs normal. The usual, “You are doing very well.” There was only one fly in the ointment. Apparently, my CRP is 0.76. Meaning less than one??? I wanted to celebrate and then Doc said, “Creatinine is 0.76.”

Now you know that’s too great of a coincidence. Since we changed insurance companies, these results came from a different lab and I highly doubt they are identical numbers.  There’s no way I went from a CRP of 13 to less than one. I shall have to wait until the next round of labwork to confirm, but Doc is right, I am doing very well. Seems my trip to Mississippi was more of a plus than a minus overall.

***Just read that Levi’s CEO advises not to wash your jeans too often as a way of helping the environment. To spot clean them, and he says when he does wash them, he hand washes them. When I read that all I could think of was my hands, how much that would hurt my hands. I may be doing well but some things are beyond me forever thanks to OA and RA. Wringing out thick denim is one of them.

But I will heed his advice and wash my jeans less often, as well as continue to do my bit for the environment in other ways. Our children and grandchildren deserve a clean and thriving Earth. As do we.

 

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Writing To You From Flare City

This is not a place I recommend you visit or aspire to be, but to drive that point home, perhaps I should take you on a virtual tour of its many destinations.

First there is Feverville. It’s a warm and cloying place where you can immerse yourself in the experience of a low grade temp.  A rise in temperature just high enough to make sure you are not left bereft of the accompanying chills. For what is a fever without those earth-rattling chills? Which reminds me, if you plan on coming here anyway, don’t forget to pack a sweater.

Immediately adjacent is Fatigue Island. This is not a location where you want to hang out indefinitely, believe me. You want to get out, the sooner the better, but there is no one else around to vote you off. And even if there was, time apparently moves at such a glacial pace that if you could muster up the energy to pack your bags, you would be doing so in such slow motion that it would be undetectable. Face it, once here, you are stuck for the duration.

Not too far away is Body Ache Development. It is called Development because no matter how many times you come by, there is always something new, something different going on. It’s an area that is filled with nooks and crannies where pain can take a hold. Rest assured, there is a special something here for every body, and for every part of that same body. Beginning at the narrow neck, it proceeds to a broader expanse called The Back. This is a wide area that can host lots of pain. And it does.

Then there are the byways, four of them, long corridors that can nurture little pockets of pain here and there. These are really dead ends for there is no jumping-off point. You can traverse them looking for a way out, but at the far and painful end you must needs make a U-turn. A U-turn that will take you back to a main component of this Complex:

Stomach Central. Here you can indulge in forbidden foods. Fried shrimp, French Fries, Coke, ice cream shakes and other sugary substances. They taste good and make you forget where you are for the moment that it takes to chew and swallow. They are classified as comfort foods only for that space of time, for once ingested they rebel, leaving you with remorse and regret as souvenirs.

None of these foodie temptations will get you home. There is no pain-free ticket to ride. No red shoes to smack together on hurting feet, no magic phrase to utter. There is only an intangible capsule called Time, and you must wait, desperately but patiently, to be ferried out and carried home.

.

 

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You Never Know

You never know when you leave home what things are going to transpire without you. You imagine life will go on as it always has. You imagine you will be missed, but that time will pass and then things will return to the before.

I knew that leaving home for two months would shake things up a bit. But things are different now; there is less to shake up. It’s only my husband and me at home. And he’d gone away and left me behind countless times. Times at sea, business trips, times at sea and now back to business trips.

I said to him, now I’m not going to be left behind. Now I go with you. “Yes,” he said. There are no small children at home anymore. I have only two cats that my neighbors are happy to feed. There is no job to request time off from. I’m a freelancer now. I work when I want. My work is portable to boot. Have WiFi, will travel.

He’s had to make one day trip so far, a meet and greet with the other Directors. “If you were with me, I’d make a weekend out of it and stay in nearby St. Augustine,” he said. I regretted that couldn’t be so. I do so want to see that city. But knowing there will be future trips to headquarters was consolation.

I thought that would be the worst thing that could happen during my time away from home. That he might have to take trips I couldn’t partake in. Sadly that proved to not be so.

While I was away, he decided to move his mother from California and place her in an assisted living facility close to our home. She’d been suffering from dementia and worsening rapidly. He found her a highly rated, top-notch place. The best that money could buy. “It’s so nice, I want to live there,” he said.

During my short trip home, I had a long talk with his sister. Explaining to her what was happening to her mother and promising that I would look after her. When I get back, I will fix up her room, I said. I’ll hang some family pictures and brighten up her room with flowers and mementos. Things to keep her grounded to today.

My husband planned to take her out for the day once she’d settled into her new routine. Shopping, dining, walks in the park. He was upbeat. She liked it there, she’d made quick friends. The reports on her were positive. She was always an ebullient personality. She’d made her living in sales. A people person.

Five days into her stay, she was transferred by ambulance to the hospital. Pneumonia it turned out to be. She’d smoked for nearly sixty years. Her lungs were weak, but she soon recovered and was scheduled to be discharged within the week. Before that could happen, she had a massive stroke. There was a high likelihood of another stroke, the neurologist said. And there would be no recovery from that.

She left us on Sunday, June 15th. Father’s Day. We all think she just wanted to see her son once more. That somehow she knew what was happening to her mind and didn’t want to live that way.

I can not wish that her life had been extended artificially. I would not want that for myself. I’ve seen too much of that kind of suffering during my Nursing days. My husband did not want that for his mother either.

I know that the room, at the appropriately named The Palace, is empty of her spirit now, but I still feel the need to go fix it up for her. I will do so in my dreams during the moments I can sleep. And in my prayers during the time that I’m awake.

I have had to hit the Prednisone bottle more often than not these past few days. My body and my spirit are torn and aching wanting, and needing, to be in two different places at once. There is no Tylenol for the soul.

And while I try to adjust to this momentous change in all our lives, I am informed that our cat, Tigress, is no longer. A sudden illness took her. It will be strange to go home and not see her welcoming shiny, green eyes staring up at me as they did for nineteen years.

Tigress 1995 - 2014

Tigress, born in my home June 19, 1995.

 

 

 

 

 

 

 

 

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Godspeed, Mary

Once upon a time I met a sailor. A sailor in the making. It was a dreamy night, hot and humid as south Texas can be. I was not impressed, with the weather or the sailor.

In spite of that, a friendship developed. Almost against my will. I was not ready. Not ready. Not ready.

One day I let him convince me to visit his mother. We drove to her one-bedroom apartment in Houston. I was unsure what to expect. I was a divorcée with a five-year-old son. This sailor was her one and only son. The sun and the moon rose with him.

She accepted me with open arms. Boisterous, talkative. There were no corners in her home where dull moments could hide.

She spent that night in the living room with her son, giving up her bed for me to sleep with mine.

In the morning, unbeknownst to me, she caught her son staring at me through the partially open door. I was asleep, he said, with my long hair spread out all over the pillow. “I couldn’t take my eyes off you,” he said.

She made fun of him later that morning. Perhaps because she knew. Knew that her son was hooked.

And that she would be part of my life for 34 years.

RIP, Mary. Godspeed.

 

Mary, on her wedding day.

Mary, on her wedding day.

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