A family's call for help from the long tail of COVID
Alana Masciana. Credit: Celia Arsen
You scan the photos and smile. She's a little girl making funny faces. Sitting on your daughter's shoulders in a chicken fight. On the field in her T-ball uniform. At all the family parties. On top of the bluff at Sunken Meadow State Park. On a bicycle in Cape Cod. With her arm around your grandson on Easter. In her college graduation gown and cap.
Then you scan another image that is only in your mind, the image in which she is lying in a bed, trapped, held by a disease as relentless as it is confounding.
The young woman is my 25-year-old niece, Alana Masciana. And if you had known her when, you would know why so many people are having so much trouble wrapping their minds around what has happened.
For the past two years, after being infected with COVID-19, Alana has been dealing with long COVID. She had familiar symptoms. Fatigue. An inability to focus. Difficulty getting up a flight or two of stairs. Then it got so much worse.
Despite taking all the right precautions, she was infected again, and within one day her life was turned upside down.
It happened in December, and she's been bedridden since. To put it simply, she cannot move. Light, sound and touch cause extreme pain, so she wears an eye mask and noise-canceling headphones every hour of every day. Everything she needs, needs to be done by someone else.
Her diagnosis is myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS), and it was triggered by COVID. Its primary symptom is a severe exhaustion that is not helped by bed rest. There is no blood test to pinpoint it and no cure for it.
The prison it puts you in is invisible but so very real.
They say you learn a lot from a crisis and what I'm learning is that as much as I've always admired Alana for her brilliance and compassion and wicked sense of humor, I am overwhelmed now by her courage in taking on this battle. As much as anything, it is important to her that word goes out about this disease and urgency is conveyed to those who do medical research and those who fund it.
Her diagnosis, it turns out, is not so unusual. In December, the Centers for Disease Control and Prevention estimated that 3.3 million U.S. adults have ME/CFS, a figure that's likely been boosted by COVID. You hear that number and you want to be angry with a medical community that makes so many advances but can't figure this out. But perhaps that's not fair.
Then you see your niece unable to muster the strength even to chew, being fed only via shakes, then seeing slight improvement from a medication prescribed off-label — as medications for this condition often are — so that now she can chew a little though she still has to be fed, and your frustration wells again.
You think of the potential being bottled up in all of the Alana's out there, and the havoc being wreaked on all those families trying to support them. It's a sobering reminder of COVID's long tail.
I don't know how many people with ME/CFS have it as bad as Alana. I pray it's not many.
I don't know how many doctors are researching this awful disease. I hope it's more than I think.
I don't know how much research funding will flow to do the work so clearly needed. I'd like to believe when they learn about Alana and the others, it will be a good deal more than now.
What lies ahead is a long, uncertain road. So on this day and on this weekend, when we celebrate return and restoration and renewal, I wish for a new life for Alana and all the others like her. Or, perhaps more correctly, old life.
Old life made new again.
Columnist Michael Dobie's opinions are his own.
Michael Dobie is a member of the Newsday editorial board.
