This is not a story about COVID-19. It is about Angelman syndrome and a daily jazz show, but the coronavirus does make an appearance.
If it weren’t for Angelman syndrome, I wouldn’t know anything about jazz. If we didn’t live near Music City, I wouldn’t know professional musicians. If musicians weren’t mostly starving, they might not work as part-time caregivers for my son with Angelman syndrome. If our grown kids hadn’t moved away, we wouldn’t have empty bedrooms on the farm during this period of coronavirus seclusion.
A perfect storm made us build a musical life raft for the COVID-19 spring.
My son, Lou, needs constant supervision — not from a medically trained caregiver, but rather a benevolent friend — to steer him away from trouble. So, normally, we trade room and board to two young gentlemen jazz musicians, Eddie and Josh, who care for Lou after school and when I travel for work. Our schedules mesh perfectly, because the jazz scene doesn’t even start until I’m ready for bed.
My early riser surgeon husband and I cover the morning routines, while the musicians do the after-school shifts. This combo lets us all pursue work we love, and gives Lou a good life.
No, it gives Lou a great life. Lou is surrounded by music — not music therapy, but working musicians noodling, jamming, practicing, songwriting, humming, toe-tapping, and singing.
As news started to hit about coronavirus cases near us, I began to formulate plans to socially isolate our household. Both Eddie and Josh had girlfriends, vocalists Lauren and Katherine, respectively, and they were always heading downtown for gigs, concerts, and dancing. Everything about the jazz scene started to sound contagious to me.
To protect my husband from catching and carrying a virus to his patients, we would have to pull up the drawbridge. I gave the guys a choice: move out and stay out for the duration of the pandemic, or settle in and stay in. I offered the same choice to their girlfriends. If they chose to stay, I would provide all their food, but they would each need to help with Lou a few hours a day, cook dinner once a week, and do a daily music show. I figured we all needed structure, and the best motivation for a musician was a regular gig and a hot meal.
At first they balked, but not about caregiving, cooking, or even about the social isolation. These professional musicians hesitated because they didn’t want to record an imperfect show for posterity. We would have to jury-rig low-quality sound and video systems, and anyway, they weren’t a band! They were jazz musicians, but played in different bands and weren’t used to working together regularly.
In the end, we made a deal, and since March 21 we have streamed a daily show from the ladies’ parlor of our old farmhouse, with Lou using his iPad to introduce songs when he feels so moved. It’s called the Quarantine Quarterhour, live from Wiseacres Farm in Nashville, Tennessee.
It hasn’t been perfect, but it has been great. Really great. Every evening, we file into the parlor to rehearse before the show, coming up with a program on the fly. Lou and I are the goofy co-hosts. Our families, scattered all over the world, tune in like clockwork at dinnertime to see us happy and healthy and playing their favorite songs. Because he works at the hospital, my husband wears a mask even at home and restricts himself to a few rooms of the house. He watches us online, too.
Everyone is using the quarantine period to branch out a little. Eddie is picking up steel guitar while Josh, an expert guitarist, is playing the big bass. Lauren took up the ukulele, and Katherine branched into guitar. My job as the show’s producer is to send out social media posts and solicit video submissions from other isolated musicians.
After the routine was established for a few weeks, Lou began to relax into the role of straight man, sidekick, and background rhythms, occasionally playing the accordion and bongos. Because of Angelman syndrome, Lou is nonverbal, but he sure can use his iPad communicator when he really wants to, routinely requesting the fans to send him candy. On air.
After seven weeks, the “Quarantet” has become a bona fide band, and there is talk of recording songs for serious release. But when the pandemic ends, we plan to stop the show and delete all the imperfect episodes from the interwebs. For me, it’ll be time to get back to science and chasing cures for rare diseases at full-tilt, and traveling to see my kids and grandson. I miss them terribly, but when this weird period is over, I’ll miss the Quarantet and the Quarantine Quarterhour, too.
Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Angelman syndrome.
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