The Power of Intention and Rituals in Illness
Living with a ankylosing spondylitis, a chronic illness, means constantly knowing that its shadow is somewhere close by, lingering, following you around like a stiff, creaky ghost.
Although you learn to predict some of it cycles, and you may know what your triggers are, there’s still always that element of surprise. You still have days where you are dumbstruck by the disease, where you think to yourself, how didn't I see this coming? You still find yourself wondering how it got this bad, why this was your lot in life, and what you can do to prevent it next time. And even though you exercise and eat well and take your medication and get enough sleep, the disease still rears its ugly head sometimes. We are not always in control. Period.
I like to be in control
By nature, I am a — how I put this lightly? — controlling person. I don’t want to be possessive of others, but when it comes to myself I can be very critical. I like things to go my way, even if I’ve gotten really good at hiding it and be more diplomatic. I'm naturally bossy. I create. I envision. I like to be in charge of projects. This was ego-driven when I was younger; nowadays I simply have leaned into my personal strengths. But, damn it, it can feel really daunting when things are not in my control with AS.
Small rituals help us gain some control with AS
Especially in our experience of disease. Ritual is a beautiful way to make your life more intentional and sacred and to gain some sense of control and autonomy in a world that moves fast and with a disease that can be very turbulent.
Over time, I've realized that sometimes I just have to go with the flow, learn to let go, and let the tide take me with her. I have to lean into fluidity and adaptability, and there’s a ritual I've created for that! Often I will stand in my shower or take a long hot bath (with Epsom salt!) and meditate on how the water moves back and forth or down my skin, taking the day's tension and negativity and toxicity with it.
As it cleanses me, I shift. I’m a big believer in intention and creative visualization, and sometimes just acknowledging the water flowing and draining is enough to remind me that all things are temporary and that tides always shift. This doesn't give me ultimate control — I mean, nothing can! — but it allows me to change the way I see myself and experience my disease.
Rituals of beauty
I also like to embrace rituals of beauty. This might mean a self-pampering session, standing quietly in the mirror and applying a face mask or brushing my hair with intentional strokes. In that moment, I am choosing to be one with my body. I am not watching my body spiral out of my control. I am giving it love, and it is there with me. We are one.
I also love domestic ritual — re-decorating a bookshelf in a way that highlights all my most beautiful books and knickknacks. Adorning small corners with a vase and some flowers. These small places function as an altar of sorts, a place where I can use my vision to create something meaningful and intentional.
Recently, I organized my bookshelves by color so that the spines move from red to pink to purple to blue to green to white to black. Simply taking time to pay attention to something in my home gives me the sense that life is bigger and more beautiful than this disease. That there are small moon moments of beauty all around us, and that we have some control over how to play out.
Rituals of body
Body rituals are important to me, too. It's important for me to take something I do already and make it extra sacred and extra intentional (that, after, is what ritual really is). When things get really rough and I have limited mobility and lots of pain, I often will turn to yoga. Of course, I do a modified and very very gentle version of some of the moves, but with each move and each breath I think to myself, “I am giving you love.” Because even when the disease is out of hand, I still know that I can stretch and move. I can still be intentional and soft and kind to myself.
Intentionality can be infused into everything we do. I know that I can make smart eating choices. I still know that I can surround myself with good people and beautiful music and soft textures and fabrics. It might not change everything or much at all, but I know that I am spending my time doing something that gives me pleasure and potential relief.
What sort of small rituals do you embrace during your day? How do you use intentionality in your day to day? Do you embrace rituals in cooking or decoration, or something else altogether?
Does reading AxSpA patient stories help you in your journey?