I wanted to write something profound here. Something poetic, something that musicians and actors would quote twenty years from now. Something that you would copy on a Post-It and stick on your fridge. A maxim – a life rule, packaged up neatly into a few brief sentences. But I didn’t.
And for that, I apologize.
Because when I actually got my head out of my own ass and thought about it, I realized that maxims (Maximums? Maximi? Maxae? Whatever…) frustrate me. They tend to simplify our experiences, all the beauty and pain and spiritual awakening, and disappointment… all that majesty and mediocrity, into played-out cuteness.
You all deserve more.
So instead of a neatly wrapped platitude, I just want all my fellow Lupus Warriors to know this: I love us. I love our fierceness and fight just as much as I love our quiet, injured retreats. I love how we gather as communities, from online groups that reach across geographical borders, to tiny, coffee house chats. How we find our strength in shared narratives, providing hope for ourselves and each other.
I love how we welcome the newly initiated into this ghastly circus act of body betrayal and prescription sleight of hand. Come one, come all, but please do not bother the circus animals – they’re resting.
The way some of us laugh our way through, while others travel inward.
We carry our burden in different ways – shouldering it with grace and unfathomable courage, sometimes surrounded by our cheering sections, but sometimes alone.
Shout out to all of you, you beautiful, exhausted butterflies. The way you push through crippling joint and muscle pain to work every day so that you can save your paid sick leave for those days when you’re really sick. To you, the parents, who remember your children’s schedules while also remembering your complex schedule of pills, shots and doctor’s visits. Your unapologetic use of the word “no.”
And shout out to the support systems – the parents, friends, siblings, co-workers, children and significant others who link arms around us when the pain, and loneliness, and anxiety, and depression get to be too much.
Cheers to you, Lupus Warriors, who watch former friends fade away and welcome new ones in their places. I lift my glass to those of us who share best practices, and gently encourage those who have begun to lose hope.
Keep sharing your stories. Keep talking to each other. Keep putting a face to this shape-shifting bastard of a disease until a cure is found. But most of all, keep taking care of yourselves.
We are strong, and our communities are growing. Keep asking your questions and demanding answers. Keep trusting yourselves and speaking with authority about your own bodies.