Weaving the web of our lives, which includes lupus
I celebrate how determined we all are to have a life worth living
During a random conversation, a family member, one of the smartest little humans in my life, told me about the books she’s been reading. One is nonfiction and the other is young adult fantasy. She was fascinated by them because, coincidentally, they shared the same theme: that the circumstances, events, and people in our lives weave together.
“Weave, present tense,” she explained. “Not ‘woven,’ as if all these things are put together in the past and the weaving is complete. These things actively weave now.”
I understood it when she first said it, but I nodded and sipped my turmeric-ginger tea.
As an amateur crocheter with an affinity for spiders, she naturally got excited while describing the complexity of crocheting and the intricate weaving skills of spiders, which is why the theme of the books was so profound. According to her readings, the circumstances, events, and people of our lives continuously weave together while new ones enter and weave in synergy.
We’ve seen similar messages stated in other ways, such as how the experiences we’ve had, and will have, help us to evolve into who we are and how we came to be. And, from Thomas Wolfe, how “we are the sum of all the moments of our lives — all that is ours is in them: we cannot escape or conceal it.”
Like a spider and a crocheter, we are weaving the web of our lives using every experience, every moment, and every person.
Lupus is part of our lives
I contemplated that message and immediately thought about this month’s schedule of medical appointments, which include meeting a new specialist, adjusting for longer infusions, and fasting for a battery of labs. These are the current people and circumstances of my life.
Once the symptoms of lupus become pervasive, the disease becomes an active part of our weaving. At times, it might even be the tool, the yarn, or the webbing we use to weave through certain phases of our lives. Just by living — whether we “do life” intentionally or not — we are weaving who we are in the present and who we become tomorrow.
Some of us believe that the outcome of that weaving will work out for our good, according to our life’s purpose. For others, the weaving is utterly chaotic, unnecessarily unstable, and void of meaning. Sadly, with that mindset, we cannot heal. We can’t help our specialists or assist researchers in discovering a cure.
Some of life’s circumstances are beyond our control, and we wish it were all serendipitous. But we’re responsible for many decisions and our reactions to situations, even knowing that some of them will trigger other reactions (such as exhausting our “spoons”).
Every day, we spin strings of web, which sometimes feels like we’re just surviving. But we’re actually interlacing the moments into a large web that is our life. We are co-creating the fabrics of our being. And we are just as responsible for the chronically ill version of ourselves as we were for the strongest, healthiest versions.
As author April Myers once noted, “There is no exit ramp to the human experience. You don’t just hop off when you don’t enjoy the ride.” This is true, although we may want to, because we are navigating a rare disease without a cure. But lupus is a part of our lives, and at every moment, the web is whole.
Yes, we are disappointed with disease, but we have survived 100% of our worst days. We have survived that which tried to kill us.
I celebrate that fact with you. If you aren’t celebrating, then I celebrate that fact for you. From a hospital bed, my friend Vanessa texted, “All lupus warriors are amazing, because we get up every day with a determination not to let lupus keep us from living our best life!”
I celebrate how determined we all are to have a life worth living. I celebrate the rigid, spiral lines in our life’s web that show how we stretched beyond lupus to survive. I celebrate your web, too. Celebrate with me.
(If you can’t celebrate just yet, read Matt Haig’s books “Reasons to Stay Alive” and “The Midnight Library” and get a healthy dose of being alive and not just breathing.)
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.
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