I’ve been looking forward to a thing.
The last time I looked forward to an event in happy anticipation rather than looming dread, was our trip to Tulsa SPCA last year. That visit culminated in the adoption of a fuzzy ball of light called Luka. I admit, he came with the name so I can’t claim responsibility for it. But it’s a fitting moniker, associated with the Latin word lux and often interpreted as “bringer of light.”
Last night, our gracious friends picked up Luka for dog sit duty, while Dave and I planned to enjoy a weekend in Denver for the 2026 Vasculitis Foundation International Symposium. I was lucky enough to be awarded a scholarship to attend the Vasculitis conference, not only because I happen to have a debilitating infirmity of the same name, although I champion any initiative to give sick people more awards. I can see it now: a bus load of us are dropped off at the capital-C Capitol, more of a meander than a march, toting wilted paperboard signs requesting “more honorary plaques, please, if it’s not too inconvenient?” Because as many sick people can probably agree, the last thing we want to be is inconvenient.
But I do hope I got the scholarship at least in part, due to my fairly valuable contributions to the publication and webinar “Voices of Vasculitis,” sponsored by the VF and Rare Disease Diversity Coalition (RDDC). If you’d like to learn more, please see the links I’ve attached to this article.*
Among MANY other things, the VF does vital work in educating patients, medical professionals, caregivers, etc. on this extremely rare autoimmune disease, as well as provides weekly virtual support groups for the community. These groups saved my life (forgive my use of an overused phrase). Having been completely blindsided and unfamiliar with my new diagnosis, I needed to channel what little energy I could muster into educating myself. I soaked up the wealth of information on their website like any good medical nerd, and I accomplished just what I’d hoped: restricting my heart’s access to my head.
I had become adept at compartmentalization, referring to my own trauma as though it were happening to someone else, constructing a mental fortress impenetrable to my emotional self. My heart had only ever been held safely, gingerly, properly by my mother, and Alzheimer’s stole her from me, bit by bit until the shell of her departed in 2017.
But the unbridled courage, kindness and compassion exuded by my fellow Vasculits pioneers offered me the safe space I needed to feel my disease. Not in a literal sense, I’d already been feeling its symptoms for nearly 2 years before I was diagnosed. Constant fatigue, chronic pain I can only describe as my veins pumping fire to and from all my vital organs, feverish chills, migraine headaches, seizures, heart palpitations, inability to eat which led to a much physically, but not spiritually, lighter being, kidney infections, terrifying nosebleeds that wouldn’t clot for hours…the list goes on. So I cried, finally. For the person I thought I was, the person I thought I wanted to be, and the woman I was to become. I haven’t met her yet, but our occasional chats have been promising.
My excitement over this upcoming trip has manifested itself in odd ways, pendulum-ing and finally working its way up to a frenzied doom. I couldn’t shake the fear that something bad was going to happen. Something bad, indeed. Not the kind of fear that some people experience before a flight, I’m quite a seasoned flyer and almost never concern myself once I feel the weightless consolation of lift-off. Which sounds kind of insane, now that I see it in print. No, this is a different sensation with which I am unfortunately familiar, and it goes something like this. “And a-one and a-two, this time with feeling: EVERYTHING IS FUCKED.” Past, present, future, interdimensional, surpassing all limits of time and space, we are plain fucked. And so it happens, we were.
Now, my scholarship included airfare for myself and Dave, my partner in true crime. I don’t know if anyone has noticed, but the prices of everything have skyrocketed (pun intended), and a single round-trip ticket from Tulsa to Denver and back is now $748. It’s one hour and 49 minutes in the air, for Godsakes! This does not include the $50 fee for one checked bag, and if y’all want fuckin’ peanuts, you have to pony up for them now, too. Oh, you want honey roasted, mister fancy-pants? Might as well file for bankruptcy. There is no way, in any dimension, we could cover the cost upfront to be reimbursed for ONE plane ticket, let alone TWO. If we could manage that, I’d be driving west as we speak, with my happy ass in a crappy car. If you’ll allow me just two seconds of reminiscing, back in the old days (mid-2000s) I lived in NYC and flew home to NC every Christmas and thanksgiving for…$176 roundtrip. Even I could afford that on my non-profit, Brooklyn-based salary.
Anyway, I commenced to check-in online last night, a small bone we’re thrown by the airline in the interest of “convenience.” I noticed only MY name appeared on the reservation, while Dave’s was conspicuously absent. I didn’t expect to sleep last night, I rarely do before a trip. But this time it wasn’t due to those childhood “can’t-wait-for-Christmas” vibes. It was because I was navigating this cluster I’d found myself mired in, my fuzzy ball of light Luka with our friends at their house, not cuddled up on my lap, licking salty tears from my cheek. I knew something would be effed, because these things ONLY happen to me, right? Well, they also happen to Dave. He’s the only person I’ve ever met with luck as bad as mine. We joke that our family crest should sport “yeah, that tracks,” and we both held the hope that our mutual bad luck would cancel itself out.
Now see? I’m doing that thing I never want to do, the “why me” bullshit. I appreciate and am aware of the fact that many people are struggling just as much, or more than I am. But pain is pain, and life is suffering, according to the Buddha. There are no metrics to adequately quantify the level of another’s pain, which is why I never understood how people can gauge whether or not they have a high tolerance or threshold for it.
But I find, once I endulge in a little “why me’s,” maybe some tears and snifflies, I can forge ahead once more and play the cards I’ve been dealt. It’s the only way through, even if the game’s rigged.
I fixed it, btw. I got no sleep…did I mention that? But Dave and I are getting tf out of Tulsa for a couple days, a little later than expected, but I’ll get to spend the weekend with some other courageous, never “why me,” Vasculitis pioneers.
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