2023 has been quite a year. I have been grieving and grappling with how unnecessarily difficult life can be with Lupus. I have often struggled to find the words to share what or how I'm feeling because it is easier to numb myself to the pain than truly show myself. But in this process of evolution and transformation, I am going to choose to be open, honest, and whole. I will keep trying even when I would rather hide or disappear. I wrote this letter to myself to express the spectrum of joy and grief that I hold in tension while existing in this body, reflecting on Lupus Awareness Month, and the journey of living with Lupus for the past 13 years. I hope it resonates with you too.
Dear Lupus Warrior (and fellow chronically ill and disabled warriors),
There are no words that I could write to properly and accurately express the profound joy and grief that you may hold in tension as you exist in your body – a body that has been marked with scars and reminders of your physical limits, but a body that knows the power of asserting boundaries to honor those limits. The honesty you must maintain with yourself to be true is honorable and does not come without sacrifice. Anyone who has a chronic illness knows how hard it is just to show up – but we show up in a myriad of ways that allows others to do the same. By taking back our bodies and asserting our agency on what we can and will do rather than focusing on what we cannot – we demonstrate the will to live our lives fully and in resistance to the defective narrative that white-bodied supremacy ascribes on us.
We did not choose to be these Warriors – we were forced to fight to survive. The calling chose us. The illness chose us. And with them, we have to choose discernment - of our time, of our use of energy, of our commitments. We have limited "spoons" to use and so every thing we do is intentional and matters, even if it may not always feel that way.
We are Warriors because we choose to fight each day whether we get out of bed OR choose to stay in it. As Tricia Hersey of the “Nap Ministry” and author of Rest is Resistance: A Manifesto says,
Audre Lorde said, "Caring for myself is not self-indulgence. It is self-preservation, and that is an act of political warfare." We must not mistake caring for ourselves through the consumer capitalist interpretation of self-care that is often sold by the billion-dollar wellness industry, encouraging you to buy more things or services to feel better about yourself. No - this is radical and so we must get at the very root.
Our root chakras are our energy sources that hold our stability and foundation - our safety within our bodies. How many of us felt like that chakra was blocked or destroyed when you received your diagnoses? How many of us felt like we couldn’t live our lives the way we wanted to because we are always thinking about the consequences of our actions and how it will impact our health? How many of us spent a long time in denial after our diagnoses, living and doing life, business as usual, only to find that your body could no longer keep up? How many of us tried to keep up that façade until you progressively got sicker and there was nothing left to give? How many of us felt like WE are the problem, our bodies are the problem, and we must contort them to fit and operate within this broken paradigm?
Dear friend, you are not the problem. You have never been the problem. Our bodies were never meant to fit within this broken paradigm because the very existence of our bodies expose this matrix for what it truly is. Our bodies make visible the erasure and devaluation that must simultaneously occur for white bodied supremacy to reign in this paradigm. We expose the cracks in this system and the flaws we are gaslit to internalize as our own individual defects.
Our bodies are political – they are politicized vessels of resistance to white-bodied supremacy - a system that deems our bodies worthless if we are unable to maximize profit and production in a white supremacist capitalist heteropatriarchy, taking away our hopes for self-actualization, as our beloved ancestor bell hooks reminds us. Our Lupus (and chronically ill/disabled) bodies were not built for that – and the recognition and honoring of that truth is an act of political warfare. To take back our bodies from comparing them under this capitalist paradigm is to sow radical love in ourselves and our wholeness – in a society that profits off our shame to manipulate us into performative overcompensation until we are left sick and burnt and unable to leave our beds without our expressed choice.
This radical love of self is the antidote to the poison we are fed about the existence we embody. Radical love of self is to caress our rough edges, to massage our tender spots, to transmute our shame to self-acceptance, to see and transform our pain as a site of self-compassion, deepening our capacity to radiate that compassion outwards. We are worth more than we’re told under racialized capitalism. The wisdom, beauty, strength, and vision that our world needs, lives and radiates from this imperfectly perfect body.
Your existence and resistance is the testament.
From one Lupus Warrior to another (and all chronically ill and disabled warriors, too) - I see you, I honor you, and I love you for ALL of who you are – not just who you show – because ALL of you is a blessing to our world - greater than humxnity will ever know.
With deep gratitude, love, and compassion,
Neary Alchemy