Storytelling: Why do I talk about chronic illness so much?
She had too many days, months and years like this. May days this bad be behind us.
Just over five years ago, determined to succeed as a photographer in Camas and on the cusp of just that, I might have asked the same.
Five years ago, my daughter suffered two concussions that ended life as we knew it. This photo, shared with her permission, sums up most of her last five years pretty accurately. She still has many hard times and many hard days. She is still technically disabled. But thankfully, most days for her don’t look like this, nowadays.
Four years ago, after encountering our local Costco utterly ransacked due to, according to the dairy-aisle dude, panic shopping ‘cause of “that sick kid in Seattle;” I spent a weekend researching what was going down in Wuhan. So, we knew the pandemic was coming. We were already isolating. Excited that my journalism degree - and right-wing conspiracist parents - had prepared me well for such a moment as this, we were jonesing to make the best of it. On a bike ride that Elspeth miraculously felt well enough to partake in, we were coughed on (as a joke?) by a teen walking by with a friend on Benton and 18th, here in Camas. One cough, outside, led to LongCovid in Aslan and I. LongCovid meant, among other fun features, crippling OCD and ADHD and a brief (we hope) heart issue for Aslan; it led to a body with a perpetually dying energy battery for me.
The most valuable wisdom any health provider shared with us came from one of Elspeth’s first docs, a brilliant neurofeedback tech named Nathan Hollenbeck, in Salem.
“There are three causes of mast cell activation syndrome (MCAS),” he told me gravely.
I will never forget that look on his face. I remember feeling this knee-jerk reaction to crack a joke, “Why so serious?” It can’t be this bad. Right?
“Viral infection, chronic illness itself,” he paused - at least in my imagination, remembering over and over, as I have since, “and traumatic brain injury.”
Nathan drew a good-cop bad-cop illustration of mast cells gone wrong - circles of cells with smiley-faces-turned-frowny faces - to illustrate his point. Thus began this mama’s sharp, steep learning curve.
If a triggering event like a virus or a TBI is the match, and MCAS is the bonfire, hEDS is the paint can hidden in the burn pile. Hypermobile Ehlers Danlos syndrome (hEDS) is a condition a lot of us were running around with, clueless about, until Covid hit - including my little (super active, martial artsing, hiking and biking) family and I. It’s an often-hereditary, not-so-rare-at-all connective tissue syndrome. Connective tissue, like mast cells, is everywhere throughout our bodies. Take a moment to connect those dots.
Up until just about two months ago, I have spent literally the last five years putting out medical fires and steeping myself in every related patient group I could find, to unlock the MCAS-trigger-to-choose a bodily system breakdown cycle. Few doctors understand MCAS or take the time to learn, so patients tend to find - or create - and share resources on their own. One excellent example: https://www.mastattack.org .
“Why don’t you just go to the doctor?” quipped a Natural Grocers checker earlier in our journey. Mmm-hmm, have fun with that. Unfortunately, our US medical and insurance systems are high-dollar capitalism profit machines. The system wants us sick. So, this has been no easy - or affordable - task.
Everyone around you struggling not to visibly sink below the poverty level? All those folks newly living in their cars? This is one reason why. Also, we vastly undercounted, not-so-rare, financially strapped ill folks are all jockeying to see too few providers. These providers are largely 1.) pushed out of practice for taking too long with patients who need more time or are funneled away from “rare” care to issues more lucrative to their employing health systems; and 2.) visibly (!) struggling with the debilitating neurological+ effects of repeated Covid exposure themselves, ‘cause no one’s masking anymore. It’s fun times.
Elspeth, Aslan and I have fought hard to win back the health we’ve regained, and we’ve found a (very) few incredible, humble, still-willing-to-learn medical providers along the way. But we would not be here if it weren’t for the NEISVoid - that’s the No End In Sight Void, for the uninitiated - and related online patient communities working so hard to try and help each other, even as they are barely well enough to help themselves. We owe them everything, and once I get this business profitable enough to start digging us out of $40+K of medical and related debt in less than one year (do the math on that one), I’m going to find ways to give back to that community.
If we all talked more about what really matters in life, so many of us wouldn’t be sinking in (barely) Surviving Capitalism ships. People I know and care about wouldn’t be clamoring for attention and funds for their GoFundMes, having liquidated their assets and maxed out their credit cards, in their quest for health care. And we wouldn’t all be manipulated all to hell for feeling guilty for using straws while billionaires jet around the world like they’re driving to the park across town.
And that, long story short, is why I talk about chronic illness so much.