Living in celebration's shadow

Happy birthday dear Becca, happy birthday to you

For Becca growing up, the excitement of a birthday was always tempered by an unusual curse: Cold sores. She always got one. Somehow Becca’s body sensed the spotlight coming and did its best to embarrass her in front of everyone. It’s the kind of cosmic prank that might make a girl like Becca laugh - except for the time her crush noticed and yelled something about “herpes.”

By the time I was celebrating birthdays with Becca, the curse was gone. She lived at an apartment complex called “Stonebridge II” south of BYU campus, and I was on the north at “Glenwood.” Life was exciting. We were 3 years into college, 4 months into dating, and both about to turn 22.

On April 11th, 2018 (Becca-birthday eve) I was up all night

in the kitchen trying to impress her. At the time I was painfully holding in my first “I love you” and hoping her feelings for me would catch up a bit. I couldn’t wait to see the look on Becca’s face when I brought her the special birthday cake her mom used to make for her.

Around 2:00 am everything was ready. I Frankenstein-ed together five layers of chocolate and vanilla cake with banana and chocolate pudding, smoothed over the resulting blob with the whipped cream Google taught me to make, and elevated the overall look with a smattering of sliced fruit. (Sarcasm).

The two miracles of that day were 1) I managed to get it to Becca’s apartment without incident and 2) it tasted really good! Her joy at the gift paid back the all-nighter many times over.

That night we saw “A Quiet Place” (a film she now understands better than most) in a beat-up college-town theater on a whim with her best friend Sarah Lowe. With that, Becca’s 23rd year had begun.

When we finally admitted to each other that we were in love, it was Becca who said it first. Lying on a living room couch together one night she told me about a dream she had the day before. In it, I wanted to say “I love you” but was holding back. After a momentous pause, she went ahead: “I love you, Stephen.”

We got married just a few months later on July 28, 2018.

The passage of time brought us a constant stream of occasions to celebrate.

Our first salaries. Our first kid. Our first home. But, like the cold-sore birthdays of Becca’s childhood, more and more of life’s joys became eclipsed by sickness. A mysterious shadow spread over her, pushing a “normal life” further and further out of sight.

Migraines and brain fog made Becca forfeit her job at a prominent tech company. Exhaustion and difficulty standing made playing with our perfect daughter more complicated. And allergic reactions kept us from moving into the apartment we had bought after a year of searching.

In the margins of every moment lurked a tinge of mourning. Loss could be observed most acutely at vacation time. After months of anticipation, all that California, Colorado, or Coeur d'Alene could offer Becca was a new bed to lie in.

Mourning inverts the significance of, and feelings associated with, all of life’s major events. All celebration begins to feel saturated with irony. Instead of enjoying the sun, you sit in a shadow it casts. Strangely, you can begin to prefer a steady state of blandness. In that, at least, the contrast between what you want and what you have isn’t so sharp.

By the middle of 2023, there was nothing that could escape the gravity of what we finally diagnosed as ME/CFS and POTS. It was ironically a long and stressful doctor appointment that overwhelmed Becca’s nervous system, the last push that sent her over the edge. Since July she has lied at all times on her back in a pitch-black room with earbuds in.

The inversion continued. Our second kid’s first steps were the beginning of Becca missing the places his feet would take him. Thanksgiving became the day when the unappetizing nature of her syringe blends was more apparent than ever. Her birthday, a solemn reminder that she had spent 10 of the 12 previous months in bed, barely alive.

These days there are only nights and the moment each new one begins is as difficult to discern as it is irrelevant.

On April 11th, 2024 (Becca-birthday eve) I was up late again,

concerned more with keeping Becca alive than trying to impress her. In the previous 24 hours, she had managed to eat a single meal: A blended omelet and some apple sauce. At Becca’s signal (a click followed by a chewing noise) I set to work preparing her second.

Like all those years before, I was holding in an “I love you” - only this time because any sound was painful for Becca to hear. I was excited to see the look on Becca’s face, not because of the way her favorite birthday cake would light it up, but simply because I hadn’t seen it for so long.

I watched the microwave timer count down in my walk-in-closet-turned-kitchen, jumping for the “stop” button as it neared zero to keep three angry beeps from disturbing the silence. One spoonful at a time I filled up a syringe with reheated puree.

Around 2:00 am everything was ready. I carried the meal through the master bath, across the blackout curtain, and set everything on a chair next to Becca’s bed. It took three trips. First, the water syringe and a full cup of sleepy-time tea. Next, five pills and a syringe of antivirals. Finally, the blended birthday breakfast-in-bed of everyone's dreams: One syringe of chili, one of salmon, and one of mixed veggies.

Becca clicked urgently as I set a paper towel by her head. It was her abort signal. She was in too much pain to handle turning onto her side for the meal.

I stashed the food in the fridge and laid back down on the bed next to hers. Then things continued as they did on many nights. 20 minutes or so of listening to Becca in pain and helping her make small adjustments, followed by an hour of rest. Then another 20. Then another hour.

After going back and forth for some time Becca clicked twice to get my attention. I leaned over her bed like usual, listening for more instructions. The way she slowed her breathing and cleared her throat told me that she would try to say a word…

“Kill.”

In the months of cycling through medications to find something that might help Becca, there have been many dark moments. She reserved this word to mark the worst of them. It was always incredibly emotional to hear, a clear admission of our failure and its consequences. When she was sure that I understood, she repeated her request in abbreviated form.

“K…. k…. k…”

I sat quietly by Becca’s bed, my hand gently touching the side of her head. There was nothing else I could do.

At 6:00 am Becca was ready to try eating again

and this time it worked out. We both settled into a more relaxed sleep. When Becca asked me to say a word a few hours later (a single deep click) I had one ready at the tip of my tongue: “Presents!”

Smell is the only of Becca’s five senses that can handle input without risking a crash, so her family and I prepared a few nostalgic scents. Chocolate cake. Lemon. A new tennis ball. Dumdum suckers. No bake cookies. I found her nose in the darkness and rested my index finger on it. With the other hand, I slowly brought in one item after another as close as I could to her nostrils without touching. A lightly frosted convenience store donut ended up her favorite.

That afternoon Becca asked for her mom to visit (two kissing noises) and the morning’s desperate plea had mellowed into a statement of feeling that anyone with severe ME/CFS immediately relates to…

“Dying.”

Over the following week, Becca and I settled back into our slow and steady ultra-marathon pace, a mix of belief in good things to come and resignation to whatever fate would bring.

Some birthdays come with cold sores,

some with boyfriends and cake, and others with a sense of doom and the smell of a donut. Unfortunately, they are not sold separately. You have to buy the whole pallet, full-loaded and brazenly labeled: “life.”

I suspect that suffering can be redeemed in time, traded in for some prize of immense value. But maybe not. I’m satisfied enough to believe that life is a terribly deep and fascinating experience that is its own reward. It’s a thing of dimension that begs to be fully experienced. And to experience anything at all is a reassuring reminder that life, with its endless possibilities - including the chance of genuine future celebration - continues.

Happy birthday beautiful Becca. You inspire us every day with your courage. May your 29th year bring you back into the sunlight.