This is the original published version of this story. An abridged version was published on Mast Cell Research as a winner in their October 2017 story contest. In March 2018, I was diagnosed genetically with Hereditary Alpha Tryptasemia Syndrome.

 

 

I coughed before the first song. That doesn’t bode well. Not surprising, but it does serve as somewhat of a premonition, a sign of the pattern to expect during this hour while I'm performing. I take a sip of warm coffee, then cough again. A rib under my right breast and curving toward my back hurts in punctuation with each cough, cough, cough, cough, cough, cough, cough, cough. Sometimes people tell me my coughs sound just like sneezes. From the inside, though, they feel quite different.

When the last strains of the organ prelude end, I slide onto the black, slick bench beside the grand piano and begin to play.

____

I've just stopped playing Giardini’s broad, majestic, “Come, Thou Almighty King,” an Italian hymn composed in the 1750s. We follow it up with “Spirit of the Living God”—a gentler chorus that is relatively contemporary for having been written in 1935.  

I slide from the bench to a still-highly-visible red chair slightly behind the piano. I've sat on chairs like this one for a decade; it is familiar and has great lumbar support.

I hear someone else cough. Yes, I notice everyone's coughing—I don’t want them to need to cough, but I appreciate the foil for the interruptions that I, myself, create.

After the scripture passage is read, I move yet again to the bench, to play Crosby’s “Near the Cross.” Somehow, as I’ve done in each of the other hymns, I manage to play the entire song without coughing. Or itching.

I slide back to the red chair while coughing the cough I’d managed to hold back. I had held it, because you’re not supposed to cough without covering your mouth. And my hands had been busy.

I mentally prepare to sit still, in front of the congregation, for 20 minutes.

I feel the sneeze coming and wonder when the last time this corner, this piano, were dusted.

Shoo! I feel better. And wonder-upon-wonders, another one doesn’t follow it up.

But I do feel a dry scratch in my throat. I take another sip of coffee, a preventative.

My right calf is itching. There’s a privacy wall, so no one will see me reach down to deal with that.

An itch behind my left ear. Yeesh, I’ve already raised my hand above the wall, and we’re just one minute in.

Itch on right earlobe.

Itch on back by my spine.

Ache in back. This chair is about the best I could be in, but even so, my lower-back-thing (sciatica, sacroiliac issues) rears its head. You got the pun, right, “rears” its head?

Itch just behind left hip.

Nose itch. How many ways can you itch your face without it being wrong? Trust me, I’ve tried hard to figure this one out.

Left itch under underarm, under my bra.

Right leg behind calf.

Right above ear in hairline. I can masquerade this one as pulling strands of hair behind my right ear.

Right inside of hairline.

Calves feel achy...how can I get them comfortable?

Left cheek near mouth.

Left shin...hey, that's an insect bite! Could that be what kicked off the wandering pruritus—the medical term for itching?

Achy left foot...stretch. Flex, stretch, flex, stretch.

Itch on left shin.

Itch right behind ear.

Back of thigh aches.

Shallow breath...let's test...ooh, good, I take a full breath, that’s better than it was earlier.

Ahhh, time for the presyncope. It starts in a feeling, a tightening, or maybe added weight outside my upper arms. Here comes the light nausea feeling.

I pump my calves, pump my calves.

I start my deep, rhythmic breathing.

I confirm that I’m sitting very tall. No, of course my legs aren’t crossed.

Right eyelid corner itch. It takes 6 rubs with the tip of my finger to get it to feel okay enough to ignore it. Blink. Blink. Blink. Blink.

Itch nose right crease.

Waist itch.

Throat closed feeling—it is the angina or do I have a lesion?

I heave one dry cough. Sip of coffee.

Left arm forearm spasm.

I feel teary. But I know nothing is really wrong, so I start progressive relaxation. Tighten the muscles in the left leg. Release. The muscles in the right arm. Release. Right leg, release.

Now I'm fidgeting; right hand using my thumb to pinch each of my fingers in turn, on the fingernail. Pointer, middle, ring, pinkie. I ball up my fist.

The back of the smooth, linen-blend skirt hem is irritating the side of my knee. I adjust it.

My left foot is aching, tingling. I move my foot against chair leg, propping it up so my toes press into the ground. That works.

Left cheekbone itch.

Deep rhythmic breathing.

Left outer cheek.

Right outside waist.

Top right of head under hair.

Right under leg.

Right back under hair. Which is in a bun so no hairs touch my face and kick off the flushing.

Nose right outer nostril.

Use my fist to rub, under & up.

Behind right ear hair touching.

Bad, bad itching on right cheekbone and left + left insect leg shin.

Behind right ear center.

Behind left hip.

Right knee—oh no, this itch is bad, bad, like a screaming itch I can't ignore.

Under left foot. This are the worst…but I can slide my shoe off and itch it with the other foot. Thankful I’m not wearing boots or my New Balance tennis shoes. That’s the worst, because it’s hard to get them off and on without anyone knowing.

Left temple hair above ear.

Shin.

Right neck.

Left eyebrow.

Back above hip.

Left of eye under glasses.

Left crease nose.

Top crown left. Oh, that one is bad, bad, bad.

“Let’s pray.” I’m always relieved to hear that, because I can itch while we’re praying. It was one of my earliest thoughts when I was young, that I could itch while praying. Later, on the stage playing the invitation, I realized that everyone sees you even when your eyes are closed in prayer. My freshman year in college, we talked about object permanence…the fact that something exists even when you don’t see it. I stored that thought away: I always need to hide my itching.

____

If you think that was hard to read, imagine living it.

Imagine 50 years of this.

Imagine a 7-year-old who can’t manage to sit still.

Imagine a 20-something who is trying to draw no attention to herself on the stage at the Carpenter Center for a whole concert.

Imagine a person who just looked at you funny, who cannot imagine what they did to earn an odd look from you (yet you didn't even mean it for them—it was a reaction to some inner compulsion).

Please, don’t pity me. I’ve been sick my whole life, and I’m (sort of) accustomed to it.

But please, just imagine. Think about what it would be like to sit in a world where the mast cells within you fight a battle needlessly—fighting battles that don’t even need to be fought.

I’ve had specialists all my life. Sometimes they believe everything about this trial. Those who don’t always eventually have quantitative evidence from medical data collection. It’s just a matter of time.

I’d like to be healed of this.

I’ve prayed for that. People have prayed over me, placing their hands on different parts of my body as if to impart that prayer more closely to my cells.

I’ve been anointed with oil. Twice.

Sometimes people aren’t healed. They live with their conditions…their coughing, their itching, their muscle aches, their fainting spells, their bone aches, their embarrassment, their __________ [fill in the blank].

And sometimes, they slide from the red chair over to the black bench, to play Scott’s “Open My Eyes, That I May See” for the invitation.

All the while, hoping that, for once, others’ eyes could be opened.

 

Keywords: Music Performance Cough Itching Medical Allergies Pruritus Neurocardiogenic Syncope Mast Cell Hereditary Alpha Tryptasemia Syndrome