“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.)