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The Burden of Lupus #BellLetsTalk

Funny thing, mental illness, when dealing with a chronic disease: It’s not very fucking funny at all. Like, ever.

In fact, as we arrive at yet another year of fundraising for yet another chronic issue, mental health, there’s a plethora of feedback on my Facebook and social media feeds regarding whether or not “One day isn’t going to make a difference.”

It does.

It always will.

Because, I would like to highlight, Lupus (in my world) has a Walk. That’s “One Day.” Cancer has marathons and pink boobies races/walks. That’s “One Day.” MS has bike rides. Prostate cancer has motorcycle rides. “One Day.”

“One Day” will never, EVER *louder in the back* deviate from the ongoing need/want/desire to keep on keepin’ on with raising awareness of just about anything and everything. In fact, having “One Day” to highlight a chronic issue can, if I may be so bold, give at least “One Day” for someone, somewhere, suffering, enduring, persevering…hope. The feeling that one is not, in fact, alone.

Because, peeps, I can surely attest to feeling fucking alone.

Almost two weeks ago now, I got a phone call from my incredible primary care physician. It was “News.” My Lupus, after enduring a third goddamn HELL on earth of quasi-experimental chemotherapy coupled with a side of stem cell infusion………..

………worked.

I am currently quiescent. All Quiet on The Lupus Front. TSN Turning Point. “Remission.”

I’d finished this last round a mere three days before one of the biggest and most incredible times of the year for me, Kaleidoscope Gathering. I was exhausted. Spent. FED. FUCKING. UP. I’d told maybe (*maybe*) two or three people, “If this round doesn’t work, I’m sure as shit not enduring any more.”

See. That was to be my “Out.” My “Get Out of Life Free,” card, if you will.

And then He took his life. My Soul-Friend. Someone who was loved beyond measure, spoken of with immense love…by all who knew him.

And, it fucking destroyed me. It made me rage, and cry and stuff emotions I so desperately needed to let out into a wee little ball of Black and I tried so hard to bury that sum’bitch deep within the very fibre of my essence.

I’d told him of my own struggles. Plural. Of where I’d wanted some of my ashes…pointed out the location of such. I was certain. I was “Done.”

Then He was gone. I witnessed the rage of my friends…his friends. I witnessed the Soul of The Mother breaking. I saw things I will never unsee. I felt things I will never unfeel. As his ashes slipped through my fingers that day where the Earth and Well took him back unto her womb…I knew.

I knew I could fucking not.

And?

I’ve thought about it every damn since. Because, it scares the utter bejeezuz out of me to continue with this kind of pain in my heart AND my body.

“Why in the blue hell haven’t you posted about your good news?!?!”

  1. Because, I was waiting for this day. This “Let’s Talk” day.
  2. Because, even with the Lupus in remission, of sorts, there’s a sudden influx of people who believe that it ends there. (spoiler: it sure as shit does not, in fact, end there)
  3. Because, I am in so much pain from a multitude of OTHER afflictions, namely fibromyalgia, that I really haven’t felt like it’s been a big deal.

But, it really actually IS a big deal. Like, Kool-Aid Man bursting through your house wall, deal.

2019: Rise of the Purple Dragon

See, I get to try to heal, peeps. Truly HEAL. My kidneys are “ishy.” My joints, shot. Some days I fear sneezing is going to cause a fucking heart attack, with the number of things wrong with it due to scarring from so many events of pericarditis. The fight doesn’t get to let up. THEN…there’s the “Holy cripes please don’t let me do anything that will cause it to come out of remission.” It’s termed, Flare Fear, within the chronic illness community.

And yet?

I still feel alone. I parent as a solo-mum. I still drag my ass to a job I do actually love (helping people through their own wellness journey) but that takes a metric ton, a whack-load, of energy and physical effort. I need a Stack-o-Whack. I still do All The Things within the management of the home, kids, schools, activities, etc. I share what I can, about the chaos of my reality…the good, the bad, the absolutely ridiculous. But, sharing opens my world up to perspective and interpretation from others, based upon those perspectives. Thus, I don’t want to burden my peeps with the depth of my struggles because…well…aren’t most of us facing our own shit? I’m sure as shit not adding mine to yours. And yet…..*ponders*

It doesn’t feel real because even my soul is still exhausted.

BUT.

I won’t ever forget looking into our friends’ eyes.

I won’t ever forget watching our friend rage.

I won’t ever forget an entire community coming together to bring mental health out of the proverbial shadows.

Because, my dear friends…there are only shadows because there’s a light.

I’m spending 2019 finding my own light, and shining that fucker so bright that even when your darkness seems so very Black, when those Brain Trolls spew venomous lies to you, when the wrath of humanity tries to envelope you within it’s ugliness and hate…you will know two things:

  1. YOU. FUCKING. MATTER.
  2. YOU. ARE. NOT. ALONE.

I know you’re there, Soul-Friend. Ninth rock from the Sun…we will light it up. But not just yet. My stardust needs to shine a little brighter.

Friends…we got this.

xoxo

Honourary Huntress: Walk of the Purple Dragon, August 2018 <3
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