Cruel Mystery

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“It’s a god-awful small affair

To the girl with the mousy hair

But her mummy is yelling, ‘No!’”

~David Bowie, “Life On Mars”

 

World Lupus Day 2016 has come to a close. Two years ago, I couldn’t even tell you when it was.

A woman who battled daily with the cruel mystery of this chronic illness raised me. The number one rule in our household was to treat SLE (Systemic Lupus Erythematosys) as an enemy that didn’t deserve acknowledgement for the tyranny it imposed over our lives.

Fuck you, Lupus.

My mother was diagnosed in 1975, around the time I was born. With understanding of its reach and effects still in development, she was given a life expectancy of seven years. For someone as ambitious as my mother, this was unacceptable.

She lived an additional 34 years. Fuck you, Lupus.

My rearing was entirely impacted by its effects, reach, and development. The drug cocktail my mother consumed daily, multicolored and multifaceted. Being loved unconditionally during childhood but pushed to be stellar just in case my mother’s life expectancy was accurate. No siblings (…not complaining). Raising myself at times during high school because she desired to check out. Having the coolest mom on the block because she had a great perspective on what was truly important in life. Hoping my mother would make it through the night or weekend.

And the pain; witnessing that pain…

If you knew my mother, or have a loved one with Lupus, you know what I’m talking about.

FUCK YOU, LUPUS.

In the midst of my grieving my mother’s passing, it dawned on me that one way to move through, move on would be to look the enemy in the eye and understand it. Not dismiss the bastard with a cavalier, ignorant “fuck you” but get the why and how behind its unpopularity.

The front lines:

Difficult to diagnose, masks as other illnesses.

Prednisone is its partner in crime.

The immune system goes on the attack.

Precarious positioning of the kidneys; brain or central nervous system; blood and blood vessels; skin; lungs; heart; and joints.

Bringing up the rear:

Deep depression and anxiety.

Heightened obsessive-compulsive disorder as a result of medication.

Life screeching to a halt because of a flare.

Constant fatigue.

Manic behavior.

There’s comfort in knowing my mother wasn’t alone, and that our family unit wasn’t either. It helps to know others understand. Today, I’m embracing that hell. It trained me, maybe a little later in life than is desirable, to be strong and put things in perspective.

Lupus, we’re not friends and we never will be. But I can’t change the past, just how to improve the future.

If you’re the child of a parent diagnosed with Lupus, please reach out to me at rebecca@redletterdays.biz. I’m interested in hearing your story.

 

(Visit http://www.lupusresearchinstitute.org/lupus-facts/lupus-fact-sheet and www.worldlupusday.org for more information on Lupus and its effects.)

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My Goliath

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Photograph: Lori Krause

“Hey, Mamacita. It’s me.”

“Oh, my lineage. How are you?”

“Good. So, I had a thought. I’m okay with Justin Timberlake as the new king of pop.”

My mom would most likely agree with me. She’d also grill me on how thorough of a listen I’ve given the new Radiohead songs and the virtues of attending Oldchella in October.

I miss those conversations. A fuckload.

 

 

While in Sweden, I worked – like full-time-everything-I’ve-got worked – on facing and harnessing my grief over her passing. I believed that after six years, I really should be over it; I didn’t understand why I wasn’t.

Then it dawned on me one day in AnnaKarin’s kitchen, pouring coffee, observing a murder of crows flying overhead:

Nanos gigantum humeris insidentes. Standing on the shoulders of giants.

My opportunities, my possibilities, the foundation of my being…it all came from her. She was my first and favorite goliath.

My grief had been rooted in profound thanks all along. Although I wasn’t blind to that, I was too distracted by making sure I was checking the appropriate issues boxes to embrace my sadness, to view my mother’s ascension as a celebration of her widely-felt positive impact.

My deepest appreciation for everyone who’s reached out over the years to share how my mom made a difference in his or her life. It’s how her gifts keep on giving; it’s been my foundation for change.

My love to each of you this Mother’s Day.

Sisters From Other Misters, Brothers From Other Mothers

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I’m an only child by birth but that’s where my oneness ends.

For over 40 years, I’ve adopted siblings – some my blood relatives, most not – and created a family that is heart-focused, smart, formidable, diverse, and stunning. This tribe, consisting of approximately 60 people, has saved my life, taught me about commitment, proven that love is above all else, and gifted me the opportunity to share in their miracles and challenges.

The whole is the sum of its parts; my world is rich because each of these individuals is gold to me. I burst with pride daily because of their accomplishments. I thank God for them before I sleep and when I wake.

Happy Siblings Day to my sisters from other misters and brothers from other mothers. I love you with every molecule that makes up my bag ‘o bones. Please know that you make a difference, always.

March 10

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“But nobody wants to hear this tale

The plot is clichéd, the jokes are stale

And baby we’ve all heard it all before

Oh, I could get specific but

Nobody needs a catalog

With details of love I can’t sell anymore”

~Aimee Mann, “Invisible Ink”

My mother knew when I was bullshitting; her intensity kept me honest, at least with her. Today’s her birthday. She would’ve turned 66.

Since her passing, I take time on March 10 to run an authenticity evaluation in her honor and for my sanity. It ain’t fancy; it’s an opportunity to check in with brutal honesty. I moved to Sweden as a result of last year’s findings.

This year, I’m in the midst of my unconventional reinvention. I’ve decluttered, unplugged, and let go to a staggering degree. This really ain’t fancy, but starting from scratch never is. However, I’ve never felt more authentic, less mucked down with bullshit. And as I look in the mirror today, I see the resolve that was missing from my eyes; I’m confident my mother’s struggle to raise me right hasn’t been wasted.

I’m creating a new book, not just a new chapter. Pattie would be proud.