I have had to learn a lot in short order about caring for a body that’s at war with itself. If that sounds dramatic, it’s because it unfortunately has been from time to time for me. And truth be told, that reality has me treading in a pool of disappointment (don’t worry; I fill it with my tears so it’s water-wise).
Ha. OK, so it’s not that bad, but chronic illness is a wily thief, and I’m exasperated. Like, will someone just call the cops already? There is a crook in this house.
I used to be agile. Fast. Strong and fit. Age and baby-making have manifested their own changes to my body, but illness adds a new dimension to the shifts, and I want a refund. Or an exchange? Does anyone know the policy on this?
I was hospitalized and diagnosed with Crohn’s disease in 2019 (an up- or downgrade from what we previously thought was just ulcerative colitis), and then was diagnosed with a second — and rare — autoimmune disease called relapsing polychondritis (RP) earlier this spring.
The former is a condition where my digestive tract attacks itself (provoked or unprovoked is the question science is trying to answer currently), and the latter is the inflammation and degeneration of my connective tissue for no apparent reason. It’s been fun.
The combo keeps my body under constant surveillance, and with every wayward test result, I fight to not feel like this is somehow all my fault.
I’m learning how to live with the physical discomfort, but you know what’s the humdinger? Being less capable — having to ask for help and accept it when generous people (more often than not, my wife, Elenor, and my family) offer, saying “no” to interesting opportunities and feeling like a lug of a parent.
You can take my soundless leaving of the ground (I only get up with grunts now), you can take pain-free days, and you can even take my time for appointments and infusions.
But my autonomy? You stop it, right now.
Since really leaning into adulting in my late 20s, I’ve taken sincere pride in being a can-do person. I could carry my physical and metaphorical weight with some semblance of grace. I could still whoop little kids’ butts at soccer. I could lift heavy things and walk 20,000 steps in a day (although, maybe not at the same time).
And now, sometimes I hurt so much I can’t even bear the weight of my 5-year-old child’s head on my chest as he falls asleep. Double ouch.
So, I joke to cope. But I don’t laugh as I lie awake at night wondering how much longer my wife will find such an imbalance tenable (she hates that I ever even wonder that for a second, and nothing about her unyielding doting suggests it, but everyone has limits, right?). I don’t laugh when I count how many times I tell my kiddo that I can’t do that or to be soft or give me a minute. I don’t laugh when I worry what changes will come next.
My therapist named this experience. It’s grief. A new buddy I’ll carry with me now as I miss not just what used to be but also my dreams of how things would go. Sometimes it might yank me like an excited pup on a leash, and other times I might be able to tame it with a rhino dart. But we’re tethered now. I think I’ll call her Madge.
It’ll all be OK. I’m not at all dying, and I have more things for which I’m grateful than time to even count them. And maybe I’ll even get nominated for a Tony Award for this most theatrical dramatization of a life experience many have with much less fanfare. But until then, you can find me with my wrist on my forehead in a constant state of fainting. Bring a fan. And good whiskey.
Marina Gomberg is a communications professional and lives in Salt Lake City with her wife, Elenor Gomberg, and their son, Harvey. You can reach Marina at firstname.lastname@example.org.