This morning I rose promptly at 7 instead of asking Alexa to perform all of her tricks — news, Jeopardy!, jokes — as I usually do to delay facing the day. I showered last night to speed my morning routine in the name of arriving at my infusion center at 8am, thus minimizing the amount of time I have to make up at the end of the day now that I am out of paid leave. #newjobproblems

I’m back to the infusion center I like. It’s a part of Arthritis and Rheumatism Associates, which ensures I think of Uncle Wiggily every four weeks. I go in, fill out a form about my abilities/sense of well-being (today I’m a six on the zero to ten/best to worst scale), and then settle in for 90 minutes of screen time and the drip, drip, drip of the drug that’s helped my disease steady for the past three and a half years.

“Uncle Wiggily wants to be cured of his rheumatism.  On the way to Dr. Possum’s office, he has many adventures.”
The Uncle Wiggily Game, © 1967 Parker Brothers

Today’s cast of patients was familiar at first — two young women receiving RA meds and an older lady in a wheelchair whose condition I was unsure of. Usually if folks take a pre-infusion dose of Benadryl, it’s a good bet that it’s RA, but some skip it. I’ve run into only two fellow MS-havers in my years of infusions. This morning brought a brand new experience. A mother and child of eight, I’m guessing, came into the infusion room together. I initially assumed that mom had brought the kid due to lack of child care, but then I noticed the sobbing. “I’m sorry. This isn’t our favorite day,” the mom told the nurses.

This girl was terrified, clutching to her face a stuffed sheep with a silky underbelly as she climbed onto the orange-y tan vinyl infusion chair next to mine. Her mom spoke quietly: Look at me. Breathe. It’s okay to be scared. You can hold my hand. There would be quiet for a moment, and then the stuttered inhale followed by a squeaky moan and nose wipe on that poor sheep. Those are the sounds of trying to be brave but knowing you’re failing. In a futile gesture toward privacy, the mom pulled the curtains I’ve never seen anyone use around the chair. A wonderful nurse came over, telling stories of other children she’s worked with, some who even learned to put in their own IVs! One was later prom queen! “I’ll make you a deal: if you stay very, very still, then I’ll be very, very quick.”

I’m an empathetic soul, so my eyes welled up on my side of the curtain. I can’t be that close to palpable fear and sadness without it creeping into me. Poor kid! I thought. I remember being terrified of blood tests! It was so hard to sit still at that age — imagine doing it knowing there’s a needle in your arm! And then my thoughts took a turn . . . Why must I wait, smiling and patient, while the nurse moves the needle in my arm, trying to hit a vein? Why can’t I sob publicly at the injustice of getting chosen in this cosmic game of Duck-Duck-Goose? Why do I have to go to work and pretend that everything is fine even on days when I am scared out of my wits that I will never be able to make a full meal without help again (more on this later), when my energy is completely sapped by heat, when I can’t seem to walk three steps without tripping?

Sometimes I just want someone to wipe away my tears and promise to take me to ice cream later.

2 thoughts on “Luxuries of Youth: In Which My Heart Breaks for a Small Child and Yet I Envy Her

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