It’s said she’s made of storm cells
And a wild wolf’s hungry heart,
That she’s learned the lightnings secret
To ripping darkened skies apart.
The power of her presence
Can bring mountains to their knees,
Her song is one of chaos
As she stirs the angry seas.
But if you’ve met her, you’d be none the wiser
Since she is also born of light,
Another face amongst the crowd;
The hidden hiding in plain sight.
Great power doesn’t always come
Inside the forms you’d assume,
But you would never doubt her strength
When she’s howling at the moon.
I didn’t write the poem above and I sadly don’t know who did but it’s such a poignant and beautiful portrayal of invisible but chronic illness. I think it’s probably true for anyone who has experienced enduring turmoil it their lives, the feeling of overwhelming chaos of not being in control and simultaneously wanting to scream it, to engrave it for all to see but also wanting to contain it, hide it and present normality and order to the world, if only to convince yourself of that external truth.
Near where I live is a wonderful zoo, my children love it there, the animals are well cared for, the zoo takes part in conservation work and the animals are easy to spot. Except the wolves, you rarely see the wolves. If you pass by you’d be mistaken in thinking no lupine creature resided there. If you lingered you’d see evidence of inhabitation, the grass is worn and tired in places, there is damage and decay to flora and the unmistakable stench of marked territory and self protection. But maybe you’d look and conclude the wolf no longer lives there, after all you can’t see it, you’ve looked time and time again and never seen it. The wolf is a frustrating mystery for my children.
The origin of the words Systemic Lupus Erythematosus stem from Lupus, latin for wolf, and Erythema, Greek for redness. I’ve read that SLE is sometimes referred to as Wolf Bite in folklore, which I like. I’ve never really liked wolves though, they scared me as a child, I remember fearing they lived in the fields outside my childhood home. They struck me as lonely, fierce and savage creatures. Since I’ve been diagnosed with SLE I began turning my attention away from symptoms and cures and into natural history. Turns out wolves are actually incredibly loyal, loving and gentle mates and parents, who are also capable of great strength, protection of their pack and will sacrifice themselves for their young. I also like the concept of a wolf in sheep’s clothing, the idea that someone can present a soft and innocuous self, “the hidden hiding in plain sight”, disguising the wolf within.
The problem arises when the hiding makes the wolf so invisible it vanishes. Lupus for me started with unexplained vasculitis and breathlessness, I had a virus I was told, I’d developed asthma at age 29 seemed an unlikely diagnosis. Years of exhaustion, pain, infections followed. Trouble conceiving my babies, hanging on to those I did. Just relax, just rest, everyone said. I couldn’t, it didn’t help even if I did, so I fought it, I unknowingly battled my wolf as it raged against me. I threw myself into work, study, motherhood feeling increasingly exhausted, ill, fragile. Till then I couldn’t, my joints hurt, the circulation to my hands and feet stopped functioning normally, the tiredness felt as though I was wading through treacle. Doctors said we’ll do tests to rule out SLE, tests were positive but the wolf was hiding, she was cunning. The doctors like my children couldn’t see the wolf despite the evidence, “its probably not lupus…its never f***ing lupus” to quote the great Dr House. Then anaemia, loss of menstruation, hair loss, my heart racing… “just rest while we treat you for anxiety” …then the low white blood cells, my liver and kidneys are also growing tired of fighting the wolf and I can’t maintain my sheep clothing anymore. The wolf within is finally revealed. Doctors stopped looking at me like i’m a fretting lamb and suddenly they see the storm cells and the damage they are causing.
So I can’t deny my wolf anymore and I can’t fight her again, for she is now firmly a part of me. Denial and anger have been my go-to phases over the past 8 years, i’m learning about acceptance, it’s not my natural strength (more on at that another time!).
Recently I read about a wolf sanctuary in Norway where you can hug a wolf. The wolves are wild and you’re taught to behave in a certain way so that they accept you. You have to adapt yourself to the wolf, you don’t run from it or hunt it, you just learn to live with it.
My tag line describes living with an invisible and unpredictable enemy but right now i’m trying hard to love my wolf, I wonder perhaps that she’s trying to teach me something important.