The novelty of this novel coronavirus we call COVID-19 is wearing off.
At first everything happened so quickly and we were too busy to let it all sink in. Rush to the store to get supplies. Call doctors to renew prescriptions. Prep homeschooling materials to educate kids.
We were running on adrenaline preparing for an invisible, deadly enemy.
If we were lucky enough to not get sick, we’ve been in our bunkers since then, waiting, keeping our loved ones safe and entertained.
We are living in this surreal paradox of being in grave danger while in the comfort of our homes. Eating well, watching television, video-chatting with friends and family. In our nonstop world, this might have felt like a break if you blocked out how terrible it all was.
The more this virus spreads, the more we feel the ripple throughout our society. If we’re lucky enough to not be sick, we will still experience the side effects. And for families like ours, they are often more severe.
We are tired. Tired from doing it all. Tired from being the only caregiver. Tired from being nurse, parent, teacher, advocate, chef, cleaner, accountant, referee, employee, spouse – all day, every day. Tired from the constant barrage of bad news. Tired of the uncertainty and fear. That exhaustion is compounded because there is no end in sight.
Some of us are mourning our “pre-COVID” lives. The impact of this virus is tenfold for us. We’re exposed to the underbelly of a world that does not value the lives of individuals with disabilities even more than ever before. We’ve lost many services and supports that depend on human interaction. We wait for systems to adapt to help us with tele-“you-name-it” during this unprecedented time. But “tele” is not a cure for everything we need.
Some of us our grieving a far greater loss. Loss of loved ones who we cannot mourn properly. Loss of the ability to be with people who need us. Loss of the ability to help those who need our help.
We’re seeing so many jokes and memes about how chaotic things are for families right now with everyone home. While it’s funny for some, this lack of routine can be catastrophic for individuals who need it and those who support them. Schools are closed. Structure is out the window. Therapists are unable to visit. The interventions that have worked for many have disappeared.
This is hard. And when we get on the other side of it, it’s going to be hard to re-establish a routine. Knowing that makes all of this even harder.
We’re at home. If we’re lucky enough to still have a job, we’re juggling being at home while working. We’re trying to teach our children while doing all of the other things. We love each other, but this much together time is trying. The primary caregiver of the house is likely doing something ALL THE TIME. There is no downtime. This is relentless. And this will not let up for months.
FEAR AND ANXIETY
We’re worried about our children falling further behind in school. We’re concerned about the impact of not having speech, occupational, and physical therapies for months. We’re upset about the loss of connection that our children had with their friends, teachers, and community.
We are terrified of what might happen if someone in our home gets this. The list of “what-ifs” keeps us up at night. We are scared about what happens if our loved one is denied care. We anxious about what happens if we can get the food, medicine, supplies, etc. that our child needs every day because of shortages caused by COVID-19. We’re worried about not having life-saving medication while the rest of the world complains about flour and toilet paper. Which brings me to …
It is totally natural to be angry right now. Angry at the world. Angry at inequities. Angry at the system. Angry at people not staying at home. Just mad as hell. And sad. All the feelings at any given time or maybe all at once.
WHAT CAN WE DO?
Don’t worry, I’m not going to suggest self-care. I’m not going to tell you to get dressed every morning. What do I know? We’re all in this together. There is no playbook for this. It is unprecedented. However, there is one thing that we can all do.
EMPATHY is the ability to understand and share the feelings of others. If someone is stuck in a pit of despair, you jump in with them and dig out together. We practice empathy often because of our shared experience of loving someone with a disability: we help each other through IEP meetings and medical issues.
Now it’s time to widen our empathy umbrella. Everyone around us is experiencing anxiety, but we all express it differently: toilet paper shortages, demanding more from teachers, arguing with our partners, eating too much; pick your poison.
Pause and practice empathy. Empathy for our teachers working so hard doing their job in a way they never have with no training or time to plan all while caring for their own families. Empathy for our partners who are likely also struggling with all of this togetherness. Empathy for our children who might understand this on the surface, but likely do not grasp the bigness of a pandemic. Empathy for strangers who we run into on trails or at the store – if they seem rude or aloof give them a pass; we have no idea what they are going through right now. Empathy for everyone we encounter from pharmacists to doctors to cashiers to everyone risking their lives in order to provide essential and not-so-essential services.
Most importantly – practice empathy on yourself. Give yourself a pass if you haven’t showered in 4 days. Give yourself a pass if you’re eating too much. Give yourself a pass if your binge watching everything on Netflix. Give yourself a pass if you yell at your kids; in fact, explain to them why you feel so frustrated right now, tell them this is hard for everyone and that we’re all trying our best. Teach them empathy by practicing empathy. Show them what a sincere apology is by offering them often. Give yourself a pass, give everyone around you a pass, and be kind.
Need to vent? Need some empathy? Need information? We’re here for you. Contact our helpline and someone will get back to you within 24 hours.