Opinion: Why my family is still isolating

When we launched into our 533-page copy of “The Swiss Family Robinson” with our then 5- and 7-year-olds at the beginning of the Covid-19 pandemic, my husband and I assumed that the Robinsons, shipwrecked on a remote desert island, would eventually rejoin humanity.

I’ll save you a year’s worth of reading — they don’t. Not in our edition, at least. (Apparently, there are happier versions of the much-altered 1812 novel in which some of the children do — but not the one we spent 13 months reading to our children.)
The Centers for Disease Control and Prevention announced Thursday that vaccinated people will no longer have to wear face masks or practice social distancing indoors, and my home state of Connecticut will be lifting most of its Covid-19 restrictions by May 19. The world around us is certainly opening up. But, unfortunately, the West Hartford Family Salerno will still remain mostly on lockdown.

It’s not because we love staying in our yard and giving the hairy eyeball to the happy neighborhood kids who run together in a pack outside our house, or because we don’t want to go back to church or pick out our own groceries at the store.

It’s because of the news that vaccines may not work as well for those who have weakened immune systems and that folks on immunosuppressant drugs may have a higher risk of contracting Covid-19 and getting sicker than the general population.

That includes me. I was diagnosed a few years ago with multiple sclerosis at the age of 40. Some of the fingers on my right hand had gone numb — from playing tennis, I thought — and I was getting a funny sensation in my neck and legs when I looked down. It took months of physical therapy before anyone did an MRI to determine that it wasn’t carpal tunnel or a herniated disc, but MS attacking my spine.

Before it wreaked more havoc, doctors put me on a big drug — a repeat infusion that knocks out a subset of my B cells. These are the cells that appear to overreact and attack a perceived invader in those of us with MS — but they’re also important cells in creating antibodies.

Since then, the attacks have stopped, and the disease appears to be under control. I pretty much operate as a healthy 43-year-old. But we took great care to enforce a strict quarantine at the beginning of the pandemic, not knowing if MS would prove to be a dangerous underlying condition in a Covid-19 infection. It’s likely not, at this early stage, according to my doctors.

We’ve continued to isolate because the data that’s trickled in throughout the pandemic indicates that my treatment could compromise my ability to mount an antibody response to the vaccine, and though my doctors now say there might be only a slightly increased risk, it may make me sicker if I get Covid-19.

Like many people in the same boat — we’ve been living as though the medicine that may be my salvation could also be my undoing.

But with high vaccine rates and Covid-19 numbers falling in our state, we were starting to look forward to going back into the bookstore or out with friends. Now, with the new CDC rule saying that masking will be required only for unvaccinated people on an honor system — it feels like we’re even more trapped.

My kiddos are too young to get the shot, and while my husband and I both are fully vaccinated, I need to maintain precautions in case my immune system has not produced any antibodies. The new CDC guidance does away with the additional layer of protection widespread mask usage provided us.

So, it’s looking like we need to stay the course and remain isolated. And I have to say, I’m tired of it. For two years, I wrestled with whether or not to tell people I had MS — I was worried about being pitied or looked at as less capable than others. Now, I tell nearly everyone that I’m immunosuppressed so they can maintain a safe distance at the vet or understand why I can’t attend their neighborhood gathering.

It’s toughest on the kids, who are in kindergarten and second grade. My children are some of the last ones still learning remotely; most everyone has trickled back to in-person school. We’ve also had to turn down play dates with families we love.

Public health experts: Why we're going to keep wearing our masks

Of course, in many ways, being alone, together, has also been wonderful.

Because some of the kids’ remote schooling is flexible, we’ve spent mornings sledding down fields or hiking up mountains. We read constantly together, diving into the mythical world of imperial China that author Grace Lin created or down the rat hole with “Mrs. Frisby and the Rats of NIMH,” and finding the key to “The Secret Garden.” While remote school by nature lacks the joy of seeing peers and teachers in real life, the dedicated staff has helped keep the kids’ spirits aloft and anchored them to the outside world.
And when I fail to remember all the good things our quarantine thus far has yielded, I should recall that there is hope on the horizon. Researchers are working on ways to help immunosuppressed folks create and maintain vaccine antibodies — including timing the vaccine in a certain way, monitoring antibody rates in those vaccinated and prescribing booster shots if necessary.
Doctors also say that antibody rates may not be the only way to measure vaccine efficacy. The shot could be helping the body muster other defenses that are difficult to quantify or understand, given the complexity of the immune system. So, I might have more protection than I know.
And, of course, there’s the Holy Grail of herd immunity. Even if scientists predict it won’t be possible in the foreseeable future, the more people around us get vaccinated, the better off people like me will be.

But until that happens, we’ll be staying our six feet apart, masks up. Not unlike those Robinsons, for now, we’re going to build some forts in the backyard, plant our garden, and enjoy each other’s company.

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