Lupus Whisperer Failings

A couple of weeks ago a someone I know sent me a note about Lupus.  He's got a student with it this semester, and he had questions.  He, and some others I know, say they only know Lupus via me and someone joked--years ago--how I am the Lupus Whisperer we all know.  Of course for every positive there is a negative . . .  there is someone else I no longer talk to who always interjects with "I don't understand what Lupus is anyway and I really don't see what the big deal is." After twenty plus years you shake chumps like that from the sugar tree, as we say.

Though, that knowing Lupus through me . . . I'm not sure how I feel about that, as on most days I wouldn't say I'm a legit voice on much of anything.   I went vocal with the Lupus Life years ago, in retaliation to lovers, friends, and now one ex-husband responding so unkindly to it.  In all reality I should be used to it all by now.  When the message came about Lupus it arrived on the heels of my 24 year marker.  Yeah.  Twenty-four years of life with this secondary beast inside of me sans a face and sans a cure.  That's more than half my life, if you were wondering, and in the long run of things . . . well the span and nature of my life changes from this history.  A few years back I pontificated on the subject, and I still feel the same . . .

These days I'm seeing more flares and residual occurrences of bodily alarm than I care to admit.  In February, as a flare was subsiding, I waxed about it some.  What did I say?

"Years ago my MD asked me how I was doing. He was being a Dr. and being the nice guy he is. I sitting there in a pair of umberos, a tee, and slides (it was the '90s yo) just looked at him like he'd grown another head. My face was flushed, read: burning like a fire in summer, every joint ached, and my legs were doing that weird thing they often do of being multi colored. The vampires across the hall had already taken a score of blood, my arm was developing a nice bruise from it, and back then plaq still gave me the nasty side effect of tossing my cookies about once a week. I had tossed them that morning. How was I doing? There was a loaded Pandora's Box.

Well, then, as hell would have it my nose turned into a red faucet (again). That, that was when I calmly said with an outstretched hand holding a tissue "Want some Lupus? I'm giving it away."

That, my friends, has been life the past week and a half. I have to say of all the symptoms and ills I get with flares the nosebleed is the worst.

And that, my dears, is the Lupus Life."

A long-time friend said it made his flares of gout seem pleasant.  In all reality, I've said it all before.  Sometimes I'm just more poetic than others.   

When I went semi-public with that I was mostly out of the hollows, as we say.  I had already taught several classes in waves of pain, I had already sat through a few seemingly endless conferences smiling and faking my way to a happy appearance, and I had already hidden my tears behind glimmering eyes and a carefully crafted facade.  I remind you of this, as I've crafted a way to painfully make it through the day in spirals of Lupus hell as I have no other recourse.  If I don't make the bed, do the dishes, and pay the rent no one else will.  I rarely go public with full on flares before they are nearing the end.  Why? There is a large disconnect and misunderstanding that you can not just take a pill and make it all better, and that you can't just go to the doctor and get a new prescription to make it all go away.  In many ways, that says nothing good about modern medicine, cancer patients often receive better treatment--in consistency, emotional balance, and pain management than Lupus patients or others on the dark end of auto immune disorders.  My favorite Weakerthans song, an old stand-by indie Canadian band, "Watermark" captures the notes of undertone well here.  After all, my body refuses to forget and "I've got this store-bought way of saying I'm okay, and [I] learned to cry in total silence."

Old school physicians will still use the phrase stages . . . stage I, II, and III. Most avoid that now, as it sets up the stereotype for doomsday . . . Yet, even among all of that medical news is never easy to embrace, and if you've had a life like mine you never know where to go with it. Instead, you wait until the worst is over, and then make note so you can avoid well meaning (you hope) remarks that you just need to push through or the--far worse--heartbreaking radio silence and slithering away from ones you love as your Lupus just doesn't work for their life map, vision, or--my personal favorite--need for the themselves. That last one: well someone I long ago stopped talking to told me that having kids and a cold is certainly far worse than just having Lupus and I really should get over myself. I was in a hospital bed, and I learned a marker of friendship that night. It still haunts me, about as deeply as the lover who never answered my call and vanished into those cold winter night quicker than the vials of blood were pulled from my arms.

That being said, Lupus is also the uninvited, creepy wingman at the end of the bar. Questionably unbathen, greasy hair, the paunch belly unattractively protruding over the belt and pants, and the cologne most likely a regurgitated can of Axe wafting up and assaulting the senses . . . yes, the unwanted, hopelessly socially defunct, and without recourse for redemption. Maybe stating that makes me a whisperer or sorts. In all reality, it just makes me vocal . . . not particularly special.

About five years ago I wrote this one for a now dead Lupus Magazine. The magazine found me, which was certainly a moment. I can't say it is particularly insightful, but it is one of my favorite ones on the subject.

All of that being said, the accruements of life never really slow down or stop, as the moments with Lupus never subside or pass on. Today my face glows, my chest aches (I had hoped it was a cold, but I am certain when I see the MD on Friday I'll come home with--yet--another bottle from the pharmacy), and my body yearns of a day it didn't feel so beaten. Some of us are left to fight a battle harder than it needs to be in order to survive. It is how we balance the good and terrible days, how we forget the harshest moments of terror and human failure, and as others think we have a whisper on the life found at the other end of the healthy isle we merely have coping mechanisms and systems of avoidance. In the end, folks like me end up whispering to ourselves that we have to push on as there has to be something better. Has to.