Below I share a couple of blurbs about Covid-19 from people who already have chronic illnesses, paralyzed and are high-risk. I spend time sharing stories, whether mine or someone else’s, not for you to feel pity, “blessed” and better about your life, yet to expand your scope of awareness outside of your comfort level and to extend inclusive empathy for all the stories existing yesterday, today and tomorrow. As always, feel free to share.❣️
@Sitting_Pretty is a PhD holder, high school teacher, advocate and a great writer.
Rebekah Taussig also happens to be in a wheelchair:
“ I’ve been paralysed since I was about three years old. Doctors found malignant tumours wrapped around my spinal cord when I was just a little over a year old. After two years of chemotherapy, six weeks of radiation, and two invasive surgeries, I was cancer free. I also began to drag my legs and fall; instead of walking upright, I started to crawl more and more. I’d pull myself up the rungs of my bunk bed or onto the couch using my arms.
Because of the malignant cancer found on my spine when I was practically still a baby, I’ve spent years of my life in hospitals, on medications, in surgery, under sophisticated medical machines, etc. Because of a multitude of factors (side-effects of chemotherapy and radiation in childhood, genetics, general wear-and-tear unique to paralysis), my body is a bit of a mess. The specifics are boring, but essentially I take a little heap of medications daily and see about seven specialists regularly to keep this body of mine functional.”
In a recent Instagram post Rebekah shares her current world of being pregnant with her first child and her husband, Micah, who is dealing with cancer treatment. Pregnancy and cancer news came to them in October of 2019 in one deafening clap, waking them up to a surreal reality. This combined with being a high-risk pregnancy and the current Covid-19 state of affairs makes this more than a trying time. To everyone out there struggling with just a few days of self-isolation, but healthy and secure, there is a whole list of people out there who were already going through hell and living dangerous chronic illnesses and compromised health and ability before this global health crisis detonated. Times see frightening but I feel thinking of others and ways we can help others soothes the anxiety. It can’t be just about us all the time. Turn fear into love.
“We were being held together by one long, thin string. And then the whole planet erupted, and the string snapped, and suddenly we’re out here floating in outer space...”
Rebekah Taussig says:
”CW: processing Covid-19 when you’re high-risk
I haven’t felt like I have much to say these days. Haven’t had wisdom or insight or clarity or anything useful to offer. Before the planet erupted into chaos, our own tiny world – navigating cancer treatment and a high risk pregnancy – felt like a lot. We were being held together by one long, thin string. And then the whole planet erupted, and the string snapped, and suddenly we’re out here floating in outer space, not sure which way is up or east, not sure how to hold onto each other, let alone the ground. Micah is still recovering from surgery and about to start months of chemo. I’ve moved into my third trimester where everything is riskier and more painful. And then we’ll have a baby? Here? On the planet that just burst into a ball of threat and uncertainty? I am teetering on the edge – my brain eager to feed me vivid images of every worst-case scenario – right here in the center of risk and fear – trying not to look at the photos of people crowding the Florida beaches.
I don’t know how to be okay here. And also, here is my tubby-tank kitty draping his heavy body across my chest and purring into my face. Or hiding in a box with his best kitty brother, making grumpy faces until I realize I’m laughing. Micah and I put on jackets and get in the car (with a whole roll of disinfectant wipes) just to drive around and listen to music like everything is almost normal. Or we take an hour to paint little monster pictures for our baby’s corner, imagining his little face looking up at unfamiliar creatures until they feel like friends. I find myself obsessively gripping my belly, especially desperate to feel his elbow or foot – again and again, he’s there tapping back like a morse code message just for me – “We’re still okay. We’re okay. We’re okay right now.” And, of course, at the very same time, we’re not. But I think this is what surviving might look like? One breath, one word, one song, one hour at a time.
I wish I had more to offer us. What I have is an attempt to bear witness and offer solidarity. If you’re in the middle of it, me too. I’m right here feeling it with you, moment by moment.”
You can find @Sitting_Pretty her on Instagram.
For those who have been in self-isolation for a couple days...imagine being quarantined for 10 years! Read my dear friend’s perspective on #coronavirus below. What people are worried about right now is Dana’s daily life, daily hour, daily minute...plus so much more. Dana lives in New York and been housebound for 10 years due to a series of debilitating chronic illnesses caused by unknown genetic mutations that permit daily mind-bending pain no human should endure. Her pain and condition is so severe she hasn’t been able to have visitors or speak in years, is going blind and near immobility. A common cold could kill her. Dana inspired my art + blog piece called “Zebra Tales” You can find Dana on Instagram.
Dana (@shewalkssoftly): “A few people have suggested that I make a post about the quarantine because I've been fully housebound and essentially under quarantine for a DECADE. I haven't been to a store since 2011 and I use a ventilator for genetic neuromuscular disease (many pics are without it because I have a chronic sinus infection and can't breathe through my nasal mask...so I just frequently gasp for air like I'm being waterboarded). It's surreal watching the whole world experience anxiety over the things I have to think about every single day (illnesses tagged in the comments if you're new here). I've had to create a whole universe for myself hunkered down in a bed with increasingly limited abilities to move and communicate, but it's strange to give advice on a pandemic because my long term solutions are so irrelevant to most people. When this viral chaos passes, most of the population will resume a "normal" life...but this isn't a temporary standstill for me. It's my whole existence. I've worked hard to be at peace with that, but today I shed a few tears for the fact that I don't get to rejoin the world with all of you when everyone is celebrating the glorious mundanities of returning to life. If anyone is struggling with social isolation (from #covid19 or any other reason) and wants to hear the strategies that have gotten me through an entire decade of it, I'd be more than happy to write a post about it. I hope everyone is staying safe. 💙”
My art gallery
Follow my wheelchair travels, art and mini-memoirs at Instagram.com/kamredlawsk and Facebook.