Wednesday, November 18, 2020

Life With a Chronic Illness During COVID

This post isn't about a petticoat.

During a walk this afternoon, all bundled up against a sneaky breeze and November's weakening sunshine, I found fallen leaves to appreciate, and spotted mistletoe maybe 15 feet overhead, waxy white flowers blooming while it lives off the sap of the trees that support it. A neighbor waved and I wondered if she could tell that I was pretty tired out despite having walked rather less than a mile. Sure hoped not. 

Tired or not, it was a mentally relaxing half hour, a time away from what is honestly is, and has been for years, a daily offensive to push through all the duties of mother and wife and worker before the daily afternoon or evening physical crash. All while knowing that COVID is spreading fast, and knowing that if, Heaven help me, I get the disease, this body cannot fight it very well. 

I have a kidney transplant. Have written that before, so some of you have heard about it. Also high blood pressure and other issues, brought on by the disease for which a transplant is a treatment, not a cure, as well as the very medications that keep this person ticking. Like mistletoe berries, they are toxic, but paradoxically, in the right amounts keep the body from rejecting my mother's kidney, a gift beyond any that I tear up about in gratitude so many years later. Those same medications suppress the immune system, making me easier prey for a host of bugs, COVID among them.

When in health, I exercise to build a cache of strength. In health or not, I watch food carefully, am compliant about taking the meds, one of which, a half inch long capsule smells like skunk. Good thing have gotten used to that: the first while taking it was a battle against gagging. The healthy times are largely good, and gratefulness to Heaven and those around me is a daily wave that washes over, as my husband and I raise our twins, now half-grown, and try to be useful and loving to those around us. We live pretty unremarkable lives.

Take this life, and multiply it by the hundreds of millions. Change the circumstances, modest, or excruciatingly difficult, or easy. 

As a student in public health, I helped with a quality of life survey in a public hospital in a large city -- in the oncology wing. Where people waiting to be treated for their cancer sat on a concrete floor if there was no chair left, prisoners walked, cuffed hand and foot, to their appointments with their accompanying officer. Some windows opened, some didn't, so the air was usually a temperature you didn't want it to be. And the staff worked against such odds. The patients, too. We talked about how they made their way to their appointment: could they catch a ride, how far was the bus stop from their home, could anyone accompany them to help them with steps or be there if something happened? Some had children, some were raising grandchildren. Some were holding jobs despite their cancer; some were too sick. Most spoke with humor, or upbeat tone, some were still, expressionless, holding it together in an endless tunnel of this-is-what-it-is, this-is-all-it-is.

When I had sepsis once, a hellish gift from E. coli, and had such shooting pains in my legs that I was crying out in the emergency bay for was it 24 hours,,'s too hard to bring back; there was a woman nearby yelling imprecations at anyone who came close. She had overdosed on something. How we felt for her, through our own suffering. I got better, and that spring we hiked -- the boys were old enough to appreciate moss and the joy of wading a burbling stream, stick in hand, mud boots on. I hope that woman survived and recovered and is living clean and has happiness.

There was a girl at the transplant recovery house, a preteen, dragging an oxygen tank but cute as a button and talking with her friends on her cell phone. She'd had her second heart transplant, having been born with damaged organs after her family's apartment was sprayed heavily for pests, repeatedly. Her mother was pregnant. I imagine, with her grit, that she made it and maybe she has a family now. She will always take medications. She will always be at risk. Her fellow patient, and mine, a man in his 50s who had worked and raised a family while on peritoneal dialysis for a decade, and had a big garden he liked to talk about with us, as we recuperated in wicker rocking chairs on the porch. His transplant from his brother was a perfect match and he didn't have to take medications like we did. He had damage to his nerves, though, so walked with a permanent shuffle.

These millions and tens of millions of people have lives and stories and many of them have suffered, oh suffered unimaginably, but they are working and raising families and many probably have funds of empathy and understanding and love for others that bring relief and grace to those they meet who are in need themselves.

A few days ago, something had the chance of happening that might have brought COVID home. The environment would be conducive to spread. Hearing about the potential event -- details aren't pertinent -- I held my hand to the kitchen counter, felt the chest tighten, the pulse skyrocket, the ears attempt to ring, all in a nanosecond. Like the evening ages ago when a man stared at me on the sidewalk, then fell in behind as I neared the apartment building, matching his footfalls to mine, and was able to get in the door and into the hallway with me, staring, his face hard, before I made it into a full elevator and the door closed between us. Like the time the lady in the eggplant-colored van pulled into our lane on a highway when my stepmother, sister and I were out to look at wedding dresses, and the car went out of control and hit the median wall head-on. That kind of fear. Existential. I swallowed it down, gritted myself into normality, but not before squeaking so hastily that attending wouldn't be a good plan that I ruffled feathers. It's like that, living under this shadow, continous low-grade stress that blows up every so often. We're most of us humans very stressed anyway. we most of us carry extra burdens, for which God give us strength. The addition of an existing illness to the cocktail is an unwelcome splash of wormwood.

You all, that's what it is, this COVID thing. An existential threat to people who somehow have been dealt the hard hand -- already. Any age, infant to elder, people who already have faced trouble and pain, some physical, some the economic or social fallout of severe illness, many both. Sometimes over and bloody over. The cancer comes back, another brittle bone breaks, a heart attack, an organ fails. I was thirty-two when they told me, during final exams in graduate school, that I had a carcinoma, severe kidney disease, and pink eye, all at once. Who had to visit the dean to beg off exams for a while, and who could barely see to get down the hallway to his office. Felt pretty goofy doing it. That girl at the transplant recuperation house, she was still a kid, our fellow patient a father. We put our lives back together and went on. Most of us? You'd never know there had ever been anything amiss, or if you did, we had the grace to just accept (most of the time) and keep going. There are so many of us with such similar experiences, living right now.

This is going to be a long winter, and for those living way south, a long summer. I don't know what I am asking. Just that the person next door may have already had a bad bout with some awful disease. They're probably pretty good folks. Why not give them a chance? After all, we're all in boats that can tip at any time.

All the best of safety and health to you. Vaccines are coming.


Anonymous said...

An encouraging post:) Thank you for sharing!

ZipZip said...

Encouraging at the end, anyway...

Had tried to write the post before and had backed off. It may be rather a stark view, but it's reality, and so many people have it tougher than I do.

Heaven bless and care for everyone,

MrsC (Maryanne) said...

Thank you for putting this out there Natalie xo
This weekend I flew to a different city to do a show. We live here fairly normally, for now, but masks are required on planes. The plague hit NZ while we were going into winter and mask wearing was pretty ok. I have several made from fun fabrics. But now it is getting warm and humid, EEWWW, revolting. I wonder if the hot weather has contributed to the push back in the Northern Hemisphere on wearing them?
Hopefully, things will get better there. I am so glad you are safe xoxo

ZipZip said...

Dear Mrs. C.,
XO to you, too!
A warm damp mask feels icky and contributes to blemishes, and of course we all now know how off our breath typically is...rather a nasty surprise. Yes, discomfort contributes to the urge to take it off, but unfortunately it has become a partisan symbol, akin to identifying someone's beliefs during the French Revolution -- cockades, sans culottes, and so on. Now we know a bit how people during the Terror felt, warily eying other people on the street.

Happy, happy summer to you, fresh air, if hot, and seas sparkly and greenery all over. It's sunny now, air damp here too, but chilblain chilly, the trees leafless, and my roses are valiantly blooming with freeze-whitened edges, before they go to sleep for the winter.



The Quintessential Clothes Pen said...

Dear Natalie,

We all need encouragement right now, no matter how heavy our burdens are. Perhaps those with more challenges need more encouragement, I'm not sure. Finding joy and hope... that is my wish for all of us.


(I also just left a blank comment... oops!)

ZipZip said...

Indeed. We are all needing support and rays of hope.

Hugs to you!