Life at a distance

Here’s what family life with disabilities taught me about social distancing

5 minute read
Home is a normal, cozy place for us to be: writer Gabrielle Kaplan-Mayer and her son George. (Image courtesy of the author.)
Home is a normal, cozy place for us to be: writer Gabrielle Kaplan-Mayer and her son George. (Image courtesy of the author.)

In 2009, I had a lumpectomy to get rid of the Stage 2 breast cancer that I discovered one day while I was taking an extra-long shower. I was 37 years old, with no family history of the illness—and a mom of two young kids: a 6-year-old with severe autism and a 3-year-old. I was not scared of my own death, but I was terrified at the prospect of leaving these two beings, whom I love more than life itself, without a mother.

Important advice

During my surgery, a number of lymph nodes surrounding the cancerous lump were removed and three tested positive for cancer. Chemotherapy and radiation followed. My oncologist told me to be extra-cautious about taking care of my right side where the lymph nodes were gone: a simple cut or scratch could cause a serious infection that could be hard for my body to fight.

I nodded and thought I listened to her words. My plate was full with transitioning my son to kindergarten, with my work, with the daily chores that come with being a mom, partner, daughter.

A few months later, I got a papercut on my right hand. I didn’t notice it at first, and by the time I did, it was too late. I went to my doctor’s office with a high fever and spent days in the hospital, away from my kids, while my arm swelled and my doctors couldn’t say if or when the infection would clear.

The antibiotics and steroids did work, my arm and hand returned to normal, and I became more diligent about caring for both my right hand and arm, and also my overall wellbeing—because surviving cancer isn’t my only major health concern.

Worrying about me

Last week, my 21-year-old nephew called me after I had texted him to say how sorry I felt that he couldn’t return to the last half of his senior year of college. Instead of talking about that, he opened our chat with a question for me:

“Aunt G—I’m not trying to scare you—but do you have enough insulin? Have you thought about what would happen if there’s a shortage?”

I assured him that I had a good supply right now and had checked on where my Novolog was manufactured and that I thought I would be okay.

I hate that with everything on my nephew’s mind, he’s also worried about me, living with Type 1 diabetes during the COVID-19 outbreak. Since my diagnosis at age 10, I’ve been keenly aware that my life depends on a syringe and a vial (now an insulin pump). Truthfully, though, I’ve never spent as much time as I have this week considering where my insulin is manufactured and how easily a catastrophe could halt production…and how quickly people with Type 1 diabetes, like me, would die in that case.

Our advantage

As we try to prevent catastrophes like that with social distancing, which is a challenge for many families, I realize it’s nothing new to us. Because of my son’s autism and his severe sensory sensitivities to noise and crowds, our family is very comfortable spending time at home. Our social circle shrank dramatically after George was diagnosed at age three: if he couldn’t do x, y, or z, it was easier for most people to drop us from their calendars. We do things that we can enjoy together close to home—like cooking and taking nature hikes with our dog—and that’s an advantage right now.

Faith, fun, and family at home. (Image courtesy of the author.)
Faith, fun, and family at home. (Image courtesy of the author.)

A few years ago, when Philadelphia’s theaters and museums started creating sensory-friendly and relaxed experiences for people with sensory sensitivities, it changed our family’s life dramatically. We were able to again enjoy the array of arts and culture that Philadelphia has to offer. While I watch people wrap their minds around life without live arts in our current crisis, I realize that parenting my son taught me not to take for granted the experience of catching a film, play, concert, or exhibition.

Dangerous denials

Many people’s response to the novel coronavirus comes directly from their own health experience. I’ve stayed healthy with Type 1 diabetes for 38 years by not only eating well, exercising, and monitoring my blood sugar, but also with meditation, yoga, prayer, and really tuning in to my feelings. I can’t afford to rage at the non-immunocompromised people who refuse to observe social distancing and deny their role in passing on the virus; it’s better to put my energy into something productive and powerful, like writing this essay.

But I’m still surprised by how adults with no special health concerns carry the false belief that this virus poses zero risk to them. I’ve observed similar denials many times. When I was diagnosed with breast cancer, an acquaintance (who happens to be a psychologist, no less) wrote me a note: “I never thought this could happen to you … you’re so young, funny, and pretty.”

That was absolutely the most asinine thing anyone said to me during my cancer treatment, and there were a lot to choose from. But it did make me realize the extent to which many people live their lives avoiding the reality of illness, death, and vulnerability—for all of us. I live in Montgomery County, and last week as the cases of coronavirus increased, I witnessed fellow parents treating the closing of schools as if it were snow day and allowing their kids to hang out in large groups. And I stopped reading comments calling the response to the outbreak “hype” in a neighborhood Facebook group. Because people don’t necessarily know that I fall into the vulnerable health group, I’ve heard—both online and to my face—plenty of educated, otherwise thoughtful people dismiss the seriousness of the virus and their role in stopping its spread.

Holding this time

For me, living intimately with illness and parenting a son with disability has made me much closer not only to my vulnerability but also to embracing the value of each human life—and for that, I am thankful.

May this be a time in which each of us stretches to think of all of us as a community of human beings of equal value—some who are more and some who are less vulnerable to the world’s dangers—and all whose lives holds equal meaning.

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