Why I'm 'Fearful and Furious' for My Immunocompromised Child Right Now

Dear Herd,

I have been watching the coronavirus (COVID-19) news closely. As the virus immobilizes and polarizes my home state of Wisconsin, I am also watching the reactions of people in our community to the spread of a transmissible disease. What set off my five-alarm, gut reaction to the recent news of coronavirus spreading like wildfire around the globe is the same thing that terrified me when there were unvaccinated pockets in our country that experienced the resurgence of a previously snuffed-out disease, like the measles.

My daughter has a significantly compromised immune system and when she was younger, she wasn’t able to be fully immunized. Because for her, the live vaccines actually presented a threat to her already struggling immune system. Thus, she was far more susceptible to the viruses because she was unvaccinated and had a compromised immune system. Even before the coronavirus, I was never far from the latest news on viruses and vaccinations or a bottle of hand sanitizer.

We are all part of the same herd, but the truth is that parenting my healthy firstborn child and parenting my daughter are about as similar as riding in an airplane and jumping out of one. I readily admit I would never understand the importance of herd immunity, germ protection or social distancing if I wasn’t the parent of a child with a rare disorder.

My daughter was born fifteen years ago and I still have a jewelry box of her little hospital bracelets, the size of pinky rings — reminders that we actually survived when it seemed like we would all perish from exhaustion, from silent surgery waiting rooms and the unbelievable way you have to cling to the earth when it has turned upside down. So I understand that the public is new to grasping what it means to manage risk and to avoid germs. I understand that until right now, the idea that there are people in this world who could be quietly carrying germs that are dangerous to you or your loved ones is a foreign concept.

I have had years to get used to risk-management. I’m used to thinking about germy surfaces, travel choices and the risks of large gatherings. Now? I am watching as our country is getting a taste of what our lives have been like, and what it feels like to be vulnerable to the choices of others who carry contagious diseases. After grappling with a mix of emotions for the last seven weeks, I have finally found the right words to describe my state: fearful and furious.

My daughter is immunocompromised due to a chromosomal deletion, 22q11.2, which causes a long list of complications. Her lack of immunity to the germy, wide world has always been on the forefront of our parental responsibility. Quite simply, just as vaccination is successful by getting the majority of the people to protect the minority, so too are germ prevention measures imperative to protecting our community from COVID-19.

As Eula Biss writes in her book called On Immunity: An Inoculation, vaccines protect the minority of the population that “is particularly vulnerable to a given disease. The elderly, in the case of influenza. Newborns, in the case of pertussis.”

And as I envision my daughter, in the case of everything. I think of her and feel a rising fury as the news bleats repeated warnings about the spread of the coronavirus and about people who have disregarded their quarantines, who continued to travel despite warnings, who are upset by the cancellations of sporting events or the maskless masses protesting the “Safer at Home” order while marching shoulder-to-shoulder around my state’s capitol.

The same disconnect that allows people to feel they have an individual choice in vaccinating is the disconnect that scares me with the coronavirus. Although the public has a “choice” to self quarantine, to travel, to comply with social distancing recommendations or to attend large gatherings, I worry because the health of so many communities and people depend on the choices of those who perceive themselves to be healthy, immune, unafraid of coronavirus — in other words, independent of a herd. When large numbers of people in our community fall ill, we will know that pockets of the virus have been brought directly into our area. At that point, it will be too late to protect the weakest members of our herd.

My hope is in the days ahead, the spread of the coronavirus will slow down. If that happens and it seems like all of this fuss was for nothing, then we should be thankful for all of the people in public health, in companies and in universities who are working very hard right now for that outcome. However, I worry that my community, like so many others, will soon find ourselves in the midst of an outbreak. And the predictions for those who are immunocompromised at that point are scary.

Susan Sontag, the author of Illness as Metaphor, wrote “Everyone who is born holds a dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

I would spend all I have to buy a permanent passport into the kingdom of the well for my daughter and others like her. But until I find that passport, I am counting on you. On everyone in the healthy, confident, unafraid, mobile herd. I hope my herd can put themselves in the shoes of its most vulnerable members. I hope you and your families remain part of the healthiest and safest and strongest herd, but that you don’t forget those in your herd who don’t hold that same passport to the kingdom of the well. And I hope you don’t forget that your actions — or inactions — right now will help the weakest among us.

Yes, it can feel inconvenient and unfair to have to cancel events, change plans or delay reopening your business to protect our most vulnerable right now. Trust me, I know. My family lives with those inconveniences every day. But please also trust me in knowing it is worth the effort. Today marks the sixth week that my husband, an emergency room physician, has been quarantined in our basement, away from our family, in order to keep my daughter safe and to continue to treat patients. While it is not easy, it is, and always will be, worth the effort.

For more on the coronavirus, check out the following stories from our community:

• The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19
• What It’s Like Parenting a Medically Complex Child During the Coronavirus Outbreak
• Please Wash Your Hands Year-Round — Not ‘Just’ Because of the Coronavirus
• How America’s COVID-19 Response Is Exposing Systemic Ableism
• Search for COVID-19 Treatment Leads to Chronic Illness Medication Shortages