BY NICOLETTE CLARA ILES
Throughout my adolescent and adult life, I have not known ‘wellness.’ In fact, mentally and physically I live with what would be described as ‘chronic illness’. Like the woodland hag who only knows the forest or the sea nymph who knows the depths of the sea only too well, I know illness. I also know joy in its fleetingness — the power of singing a favorite song from the top of your lungs — and what I often say has been a great addition to my coping toolbox: Creativity.
Living with various diagnoses, their forms changing and taking on new names with fresh manifestations quite often, the reality of living with them is grasping for hope.
Hope, by definition, could be seen as ‘wanting something else to happen’, but for those of us with chronic illness, we know that ‘something else’ is unlikely within our lifetimes. But there is such a thing as hope. For me, it is in creating.
Utilising my creativity has meant taking this gift, however it’s looked at, and turning it into something manageable. When there is little to ‘manage’ in a daily life of illness, something stirs within all that pain and suffering; call it magic, call it art, call it hope — or whichever name it goes by — but it is potent.
Within that potency, a vision. It can be what you hold onto during a flare up or an episode. Some call this self-care. While I view self-care as something instrumental for ourselves, there is that looming demon of capitalism, the industry of self-care or wellness — which doesn’t always find ways to include those of us whose way of being is not or can’t be, well.
So what can we do, as chronically ill people, to shine our light? It certainly is a hurdle to have your voice heard, when at times it can be near-impossible to speak it. That is why I speak the language of images and storytelling. With creative self-care, one can imagine whole worlds they wish to reside in, even if it’s from bed.
Amongst the various ways to approach creativity as a chronically ill person, I would advise to play around with that which works for you. In order to discover this creativity within, playful exploration is a key.
If you have a day where all you can do is very little, see what that little amount could entail — without pushing yourself beyond your limits. On days like this, I like to write not whole poems, but fragments. See how writing small passages of words looks upon paper, and how it feels to “get out” those words, no matter how short they may be.
It could be painting with the element of water by your bedside, or expressing how you’re feeling with the fire in your belly speaking out, but whatever it is, it is worthwhile.
In the most recent years of my illnesses, I have learnt some self-care strategies that don’t just include objects you need to buy. Sometimes, in the worst pain, we may already have some of the tools we need.
Panic attacks taught me about the power of the breath, and how breathwork has the potential to be a free factor in self-caring for this painful body. The spirituality that arose from curiosity taught me that without factoring in the Mind, Body & Soul, these three main parts of ourselves can become out of balance. Physical pain teaches me not to push the boundaries of this body, and within that, how to be more compassionate.
A helpful breathing technique could be one that you create, or one that exists. I like to focus on the out-breath as it flows out. Time can stretch so much when we have so much of it to our hands, and focusing on the breath that exhales out of us can calm the nerves of the next inhale. Feel free to re-create your own version of this.
Visualisation, a type of magic to me, is also a meditative exercise I find useful. Visualise yourself being surrounded — if you feel called and safe to — by a peaceful light. As this “light” holds you in safety, visualise it calming all the tension of your soul and body. While we may not be able to “rid” ourselves of pain and illness, we can, if only for a moment, imagine these tense feelings washing away in that space.
Self-care, to me, comes from listening — to the body, the mind, and what rumbles within the soul. Ask yourself:
What do I need right now?
What have I needed?
Can I find that from where I am currently?
When you can listen to yourself, or feel listened to, it can be a soulful way of soothing all the ways we haven’t been listened to as people living with chronic illness. We owe it to ourselves to listen to our minds and bodies, in order to care for what we may need them to receive and feel.
Some of us may have less privilege or resources than others may. However, we do have the power of gifting ourselves our deepest desires in that which lifts us up. Find a story that resonates with you, and you are already the hero of that story, because you are fighting each day. You are listening to your own body, even if it’s screaming to be heard more than you’d like. That story holdS the archetype, the joining thread that guides you into caring truly for the self. The gift of being gentle to a chronically ill mind or body is one that will serve as the power we need to go forth in these lives.
Nicolette Clara Iles is a British-Jamaican photographic artist, witch, storyteller and lives with Schizoaffective Bipolar Disorder and Fibromyalgia. You can find their work via nicoletteclara.co.uk or @nicoletteclara on socials.
You can also support them via: Paypal.me/farmwitch