“Suffering has been stronger than all other teaching….
I have been bent and broken, but - I hope – into a better shape.”
– Charles Dickens, Great Expectations
There is a story about the wolves of the Yellowstone National Park in the Lamar Valley. Some believe that reintroducing the grey wolf in 1995 led to profound consequences for the park's ecosystem and physical geography - large-scale change that ecologists call a trophic cascade. The elk population declined, forests regenerated, and other flora and fauna began to thrive again. Even the behaviours of the rivers changed in response to the wolves.
The reintroduction of the wolves was controversial and the narrative of their impact is still debated at length. The contradiction of a life-giving apex predator is notable too. This simple tale of complex wildness resonates with me. I think of a wolf I know - Lupus, an autoimmune condition - and wonder: how has the wolf of Lupus shaped the geography of my soul?
A thousand faces
Systemic Lupus Erythematosus (SLE) is a chronic disorder of the immune system. Self-reacting antibodies attack the skin, joints, brain, lungs, kidneys, blood and various body systems. Sometimes called the Disease with a Thousand Faces, Lupus (Latin for ‘wolf’) presents itself differently across patients, with symptoms changing in type and severity over a lifetime. The exact causes are unknown; likely, several factors acting together trigger flares, striking without warning.
Treatment involves a cocktail of potent drugs that is carefully and regularly remixed. Under-suppress the already-exuberant immune system and risk active disease. Over-suppress it and expose the body to infection. One of the first things I was told at diagnosis in 1999: “It’s the other things it allows in that kill you.” Drug usage is also closely monitored, for potentially debilitating side-effects in the long run.
Managing Lupus well involves more than having medicines for breakfast. An open and trusting relationship with the medical teams helps greatly in bearing the weight of unknowing. From the rheumatologist who is expressly frustrated with regressive results, to another who spiritedly exclaims: “Let’s take this beast down together!”. The nurse who praises healthy blood pressure: “Good job, well done!”. The phlebotomist who converses merrily while locating fine veins. The pharmacist who scrutinises awkward prescriptions with furrowed brow... They show patients like me that we are not alone in the long fight.
At the medical centre one Christmas, I was ill, very discouraged and needing to decide on switching therapy. Dr. Grace was the attending physician and she was true to her name. The usual procedures - results, physical examination, tweaking medicines - were touched with patience and a certain human-ness. Her seemingly small gestures rekindled what had been beaten down to embers.
We never know when we might be a Dr. Grace to someone we meet, just by choosing who we will be in the moments given to us. We can never guess how much it means. Hope plays in a thousand faces, including our own.
A daily fidelity
In an early letter to close friends, I shared: “Everyday routine is carried out in shifting battlefields, and the lucid sufferer is an involuntary warrior.” Such is the perplexing rhythm of Lupus. It waxes and wanes; the patient who dismisses this does so at his/her own peril. The small fidelity of listening to and honouring this rhythm calls for gratitude and wisdom in the ordinary drama of daily life.
On days when I do not take great strides in victory but hobble along to the next miracle, I can celebrate small normals, take the strength they offer and keep it for dark nights. Other times, I cannot rise from bed because my legs fail to bear my weight, or cannot squeeze toothpaste from its tube because my fingers are too swollen to bend. In these moments, I can meet the terror of my own nothingness knowing, as Ruskin said, that “there is no music in a rest, but there is the making of music in it.” I can embrace rest as an active effort to draw boundaries around the slow and capricious violence of Lupus.
We do not and should not have to wait for a life-changing illness, to pay attention to what is going on in and around us. Every day is an invitation to tune in.
A severe mercy
“Would you say that your quality of life has been badly affected by SLE?” the young medical students asked, diligently taking case history notes as I described my journey.
By a common standard, Yes. It has tempered my aspirations and expectations, and is an inconvenient factor in decisions big and small. I have had to say hard but necessary ‘No’s, living around a calendar filled with various specialist clinic appointments.
But Lupus is also a severe mercy. It serves as a humbling reminder that I am finite, an early signal that I am mortal. Sobriety is a great gift that can inspire us to number our days and gain a heart of wisdom. For all the pain and suffering the wolf of Lupus has brought, it has shaped the way I live and view life and death, for good.
It has reminded me of what we should never forget and perhaps take for granted. We should ask ourselves: Are we living as we shall wish we had lived when we come to die? Do we know what really matters, and will we live out that truth?
In the words of John O’Donohue:
That the silent presence of your death
Would call your life to attention,
Wake you up to how scarce your time is
And to the urgency to become free
And equal to the call of your destiny.
That you would gather yourself
And decide carefully
How you now can live
The life you would love
To look back on
From your deathbed.
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Part of John O’Donohue’s poem For Death, in To Bless The Space Between Us: A Book of Blessings, 72.
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Wendy is the Creative Director of welenia studios, serving individuals, groups, and communities through visual recording – mirroring and depicting conversation, stories, meaning, and futures as large-scale graphic syntheses in real-time. She has been a Lupus patient for 18 years, and ends each day by recounting her blessings in a Gratitude Journal.