YOU CAN'T BE SAD IN A MEXICAN RESTAURANT

'What Primary Progressive MS Actually Looks Like Over Twenty Years, Told By Someone Who Watched Every Step Of It'
Written & Narrated by Duff Archie

​Our family has a saying: You can’t be sad in a Mexican restaurant.

It’s not really so much a rule. More of a running observation that grief and guacamole are fundamentally incompatible, that whatever you’re carrying tends to feel slightly absurd in a room full of chips, queso, margaritas and mariachi music. It started as a joke somewhere and calcified into fact.

Which is how, on an overcast Presidents’ Day weekend in February 2018, my brother Ben and I found ourselves in the back booth at Taqueria el Poblano on Mt. Vernon Avenue in Del Ray, voted number one for the best margarita in DC, Zagat top ten, fresh ingredients and enough ambient noise that the family at the table next to you can’t hear what’s being passed across your table, trying very hard not to be sad in a Mexican restaurant.

My mom had called a week earlier. It was one of those calls where the actual words didn’t matter because the tone of voice had already told you everything. I was knee-deep in my final semester at St. Lawrence University in upstate New York and booked the first flight I could find. Ben was a senior at Episcopal High School, three miles up the road. He signed out for the weekend. We didn’t know the rest until we sat down.

That’s when she told us that Dr. Stephen M. Minton, my dad’s primary care physician, had come to the house. He’d sat with my dad, listened to his breathing and said the word terminal in the same living room where we’d opened Christmas presents a mere eight weeks earlier. My dad, Timothy R. Archie, a man who had been running wry commentary on his own neurological deterioration for nearly two decades, looked at him and said, “Well… I guess it’s time to exit stage left.”

My mom set two printouts on the table between the chips and the queso.

“Our family has always said PPMS is a unit of time, a unit of decline,” she said. “Here’s what that means.”

The document was the Expanded Disability Status Scale, the EDSS, a clinical rating system used to measure the progression of multiple sclerosis. Ten steps, each broken into half-steps, each half-step representing roughly one year of functional decline in our context.

She’d found it when my dad was first diagnosed, filed it somewhere mental and retrieved it nineteen years later when she needed a way to explain to her seventeen- and twenty-one-year-old sons that their father was going to die and that there was, it turned out, a map for exactly how he’d gotten here.

Heads down, Ben and I read down the list, intent on reading our respective pieces of paper. For about ten seconds, the restaurant went quiet like you’re underwater, but the noise was still there. But still, you’ve gone somewhere slightly outside of it, adjusting, trying to locate yourself inside something that hasn’t finished landing yet. I felt the weight of it balloon in my stomach. Ben went somewhere else entirely.

We cut our eyes to the bottom of the page.

9.0: Helpless bed patient. Can communicate and eat.
9.5: Totally helpless bed patient. Unable to communicate effectively or eat/swallow.
10: Death due to Multiple Sclerosis.

​We were past step nine. We all knew it. Nobody said much. The queso kept coming.


PPMS doesn’t announce itself in one terrible moment you can point to later and say: There. That’s when everything changed. It’s gradual and cumulative. It is, almost by definition, a unit of time and a unit of decline.



IF YOU WANT TO FIND THE BEGINNING, YOU HAVE TO GO BACK BEFORE I WAS BORN

My family has always gone to Acadia in July. The first two weeks, non-negotiable. In the mid-nineties, before I came along, my parents were hiking the trails in that particular New England way, straight up, no switchbacks, roots breaking out of the ground every few feet like the forest is trying to reclaim the path.

Regardless, my dad kept tripping, his right foot catching on something invisible, sending him to the ground while everyone else stayed upright.

He named it Root Man, a mythical character coiling around your ankles in the dark, intent on dragging you under. He thought it was hilarious.

That was probably a 1.0.

Just before my third birthday, in a moment preserved in a favourite family photo, I was standing at the curb outside the Palace Hotel in New York City as my dad crouched protectively behind me. Sheltered in his arms, I raised my little hand to call a taxi. Only much later would I learn what was really going on with the adults at that moment.

The day before, my dad was officially diagnosed with Primary Progressive Multiple Sclerosis. He’d known the disease his whole life. His grandmother had it, though a different type, and he understood immediately what the diagnosis meant.

Rather than wallowing or postponing, Dad kept his promise to me and took me on my first trip to New York City on the Amtrak to meet up with Mom after her business in New York concluded.

Dad set the example that day for the rest of our journey with the stupid, he would joke, disease:
MS doesn’t get to cancel family trips.



THE ARCHIES GO ANYWAY

A few months later, Dad and I were at the Montgomery Park playground as I climbed all over the Stegosaurus jungle gym, ten minutes from our townhouse in Alexandria. He wasn’t chasing me up the ladders and down the slides the way I expected and as he’d done in the past. He was moving carefully, deliberately, and even at three, I registered the difference between tired and something else.

“Sorry,” he said. “My legs are just tired today.”

Kids file things and move on. I filed it.

That was a 2.0.

Still in preschool. Ben wasn’t born yet, which means I was somewhere between three and four.



​WE WERE PARALLEL PARKED ON LOWER KING STREET, ACROSS FROM SCOOPS, OUR FAVORITE ICE CREAM SHOP WHEN A WOMAN CAME UP TO THE DRIVER'S SIDE WINDOW OF OUR RED CHEVY TAHOE

I was in my unassigned assigned seat: left side, directly behind the driver. I saw her coming and thought, Stranger danger. Who is this?!

She was furious.

How dare he, she said. Drunk in broad daylight with his small child in the car. How dare you!

My dad had a limp and a wobble in his gait. The old Root Man foot drop, now a permanent feature. To someone with no other frame of reference, that reads as daytime drinking.

He let her finish. Then he explained himself. I don’t remember the exact words, only that they were pointed and probably funnier than the situation warranted. The woman’s face changed, and she left.

Deflect and disarm. Dad always had a one-liner ready under pressure.

That was a 3.0.



THE YEARS BETWEEN THREE AND TEN ARE, IN MY MEMORY, THE YEARS OF THE CAN AND THE SIXTEEN STAIR

Our townhouse in Old Town had four floors with sixteen steps between each level. The garage opened up to a first-level TV and playroom for Ben and me, the kitchen and living room were on the second, the bedrooms and laundry were on the third and his home office was on the fourth.

Every night, Dad got some food on the table, lit the candles by his own insistence and we reviewed the day’s events. At dinner, we talked about whatever a fifth grader and a first grader had going on that day. We ate chocolate Häagen-Dazs. He helped me with Language Arts.

He offered, repeatedly, to help me with Spanish. His command of the Spanish language extended to Hola española, deployed with an enormous grin, which I told him was exactly two words too few to be useful.

I walked right into his joke every time.

After dinner and homework, I helped him back up the stairs. Ben and I would help position his feet on each step, one at a time.

Right foot, bend knee. Left foot, bend knee.

Sixteen stairs.

Two little boys and their dad getting by, our mom still at “the office.”

This was, looking back, steps three through six. Days to months to years of ordinary routines forming the texture of the whole thing.



ONE AFTERNOON, I CAME HOME FROM SCHOOL, AND THERE WAS A METAL WALKER AT THE TOP OF THE STAIRS
Just standing there in the hallway, four bare metal legs, but no tennis balls on the feet. That would not be up to the Tim Archie standard.

If MS is going to take away mobility, we’re at least going to be stylish.

​This was the kind of appliance you’d see at your grandparents’ house or in the background of a TV show. Walkers “belong” to old people, to the shuffling-to-the-kitchen scenes for some Ovaltine, not to your house, not to your dad, who was in his mid-forties.

I stood there and looked at it for a moment.

I put my backpack down and went to find a snack.

That was a 6.5.

​
THE BASS HARBOR HEAD LIGHT SITS ON A GRANITE CLIFF ABOVE THE ATLANTIC, AT THE SOUTHWESTERN TIP OF MOUNT DESERT ISLAND
​
The classic view, the one on every Maine calendar, is from below. You descend a set of wooden stairs bolted directly into the pink granite ledge, steep enough that you grip the rail on the way down, and from the bottom, you look back up at the lighthouse against the sky.

For years and years, my dad took those stairs.

Slowly, yes.

With a cool-looking hiking stick. Then a cane. And yes, very carefully.

But he took them every time.

Until he couldn’t.

No more Root Man.

There’s also a short, steep paved route to view the lighthouse that curves down the opposite side.

The Archie family group hovered at the top, deciding whether to bother. The concern, navigating a wheelchair on that grade, was momentum. The chair would get ahead of us and go straight into the pink granite and the ocean below with my dad in it, face-planting into the pavement, or worse.

The vote was “not worth it.”

Which is when a group of Vietnam veterans materialized in their blue and gold American Legion caps and jackets, assessing the situation in roughly three seconds.

“Last great mission, boys,” one of them said. “Let’s go.”

And then they were just there. Behind the chair. Beside the chair. One of them apparently in command, running a full debrief on weight distribution and footing while my dad sat in the middle of it all with the expression of a man who had not consented to any of this but could also see, objectively, that it was extremely funny.

Although always mannerly, Dad didn’t love being physically manhandled down the steep granite slope, even with four Vietnam veterans running point.

What he did love, and what he would bring up later more than once with the grin of someone storing quality material, was the “last great mission” framing.

The sheer commitment to the bit.

The fact that these men had assessed the situation, appointed a leader and mobilised in the time it takes most people to find their sunglasses.

​That part, he had to respect.

Hadn’t he been doing the same?

That was a 7.0.



IN 2010, I LEFT FOR EPISCOPAL HIGH SCHOOL, AND MY DAD MOVED DOWNSTAIRS

Ben’s and my old playroom got renovated into a fully accessible suite. Wheel-in shower, Tempurpedic hospital bed, the whole thing professionally designed, as Dad was an interior designer himself.

Curtis Lomax came on as his full-time caregiver. Within about a week, Curtis was as much a member of the family as anyone, covering overnight shifts when my mom travelled, feeding, showering, shaving, dressing, driving and entertaining as a masterclass in dignified caregiving.

He’d manage to get my dad’s 165-pound, five-foot-eleven frame from bed to wheelchair to car and back with efficiency, grace and what Dad called “the Lomax Smile.”

My mom told me years later that the Big Move downstairs was one of the hardest periods for them. He took the move personally, the way it would be hard not to take personally, the sense of being tucked away from the main floor of family life, managed.

Am I not even part of this family anymore?

The answer to that was a resounding, “Of course you are!”

More than he would ever come to know in the years since his death.

But this was more demonstrated than stated. We brought dinner downstairs every night. No policy or announcement. It was just what we did because we eat together as a family.

After all, that’s what we were taught from the time we were tiny, and MS was going to have to figure out something else to take because it wasn’t getting that.

Mom and Dad ate on the adjustable Tempurpedic bed like Grandpa Joe, Grandma Josephine, Grandpa George and Grandma Georgina in Charlie and the Chocolate Factory. Ben and I sat in a ladderback armchair and a big leather armchair scooted to his bed. Tucker, the golden retriever, curled in the corner. Turner Classic Movies played muted while we talked about the complicated lives of a high schooler and a middle schooler and, later, a high schooler and a college student.

That was 7.5, building slowly to 9 across seven years.



​“FEVER'S SPIKED”

January 2018.

I was home on Christmas break, up on the fourth floor, the old home office, which had become the TV room “Man Cave” by then. It became the place where Ben and I migrated when everything else in the house migrated downstairs.

I was on a rewatch binge of Breaking Bad on Netflix. Curtis appeared at the landing of the stairs at the end of his shift, coat already on.

“Hey, you might want to go check on your dad. Fever spiked.”

I went downstairs.

I had to lean close to hear him. He was trying to say something, and I couldn’t make it out. I could feel him breathing, his lips trying to slowly form words, no real sound coming out.

That’s when I knew this was different.

I called my mom at the office.

“I think you need to come home. Things don’t look good.”

I didn’t have a clinical word for what I was seeing.

What I was seeing was the beginning of chronic respiratory failure. The disease had finally progressed to the point where the lungs and the swallow reflex would not cooperate.

I didn’t know that just yet. I just knew I needed Mom home.

Dad was sick. Maybe pneumonia. Maybe some antibiotics would help.

We’ve got to do something for him.

That was 9.5.

One month later, give or take, we were in the booth at El Poblano.

We talked about hospice, the best medical decision we ever made and one that, with hindsight, we should have made weeks or months earlier.

We talked about the DNR, the Do Not Resuscitate order, the legal document that instructs medical providers not to intervene if a patient’s heart stops. No CPR. No machines. No prolonging it beyond what he’d already been through.

My dad had been clear about this. He didn’t want to be kept alive by feeding tubes.

The lowest days in his twenty-year expedition with PPMS were the ones spent in a hospital, getting antibiotics for some infection. My mom explained this to Ben and me between rounds of queso.

We sat with it and agreed, because of course we did.

You don’t watch someone fight a disease with that kind of dignity for twenty years and then argue with his final wishes.
I think we talked about school. I think I talked about job prospects after college in three short months.

Ben recalls nothing but blurry images: the queso, the EDSS paper, the people. But no words, no stories, his seventeen-year-old brain cycling into protective dissociation, no doubt.



​Step 10.0: Death Due to MS

There it was, at the bottom of the document, between us on the table in a Mexican restaurant that had been open, as I would later discover while writing this essay, since 1999.

You’ve got to be kidding.

1999?

That’s the same year as the diagnosis. The same year as the Palace Hotel and the Amtrak and hailing a cab, as “too tired today” Dad at the Stegosaurus jungle gym.

Award-winning, authentic SoCal and regional Mexican food and drink since 1999.

The timing is so perfectly absurd that I’m convinced my dad would have had something to say about it, something delivered with an enormous grin and impeccable timing.

He died on March 19, 2018, at 1:04 in the morning.

A unit of time.

A unit of decline.

Twenty years, twenty half-steps, one man who met every single one with a public quip and a walking stick and a cane and a walker and a wheelchair and the patience of someone who understood, better than most people ever have to, that you don’t get to choose what you’re given.

Only what you do with it while you still can. ∎

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Learn more about Expedition MS: ​www.expeditionms.org
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