Dis-ease (noun): early 14th century "discomfort, inconvenience," from OldFrench desaise "lack, want; discomfort, distress;" from des - "without, away" + aise - "ease". 'Without ease'. What a beautifully simple yet illuminating way to look at disease. To live with a disease is to live without ease. To cure a disease is to reconnect with ease. Simple. Clean. Easy to digest. And lets be honest, we all like easy.
But for those of us who have 'incurable' diseases, for those of us who will have to live with our diseases for the rest of our lives - what does this mean for us? Are we left to live without ease until we die? If we will always have our disease, will we never have ease? Can we only find ease when we get rid of the disease? (I freakin' hope not.)
I've been pondering this for a while now, trying to wrap my head around what it really meant for me as a person, as someone with a disease. Walking through this illness for the last two years, I have rarely felt "ease" in any sense of the term. Even as i've embarked upon a massive journey to heal, Ease isn't one of the words that really comes to mind when I think about the 'healing' i've done. But healing is supposed to get rid of the dis-ease, to bring you closer to ease. Isn't it?
Well, that's the goal I suppose. But in my experience, i've come to understand that healing doesn't always look like healing, at least in the way we commonly understand it. For some of us, our healing looks (and sometimes feels) more like sickness than it does like health. Progress isn't made overnight, or even over many many nights, when you live with an autoimmune disorder. "Progress" for us is more like a rollercoaster, sometimes inching its way on up to the top, but often quickly crashing down just to start over again. And so when healing doesn't really look like healing, and when healing doesn't really feel like healing, it can be easy to give up hope, to think that we are doomed to live with our disease, without ease, for the rest of our lives. It can be easy to forget what 'ease' even is anymore.
But what we have to remember is that labels, like "diseased," only make up on small part of who we are. They only make up one small aspect of what we are. Yes, we are dis-eased - often without ease. Yes, we are sick. But we are also so much more than that. Just like while 'daughter' is one of my labels - one of the first ones i ever had and one of my most treasured - it isn't my defining one. I am also a sister. A partner. A friend. A student. A boss. A human. And just like "sick" is one of my big labels in my life right now - one where a lot of my time and energy gets diverted to - it isn't my most important one, because I am so much more than just sick. I am also 'smart', and 'passionate' and 'learning' and 'growing'. I am healing. I am changing. I am seeking. Seeking ease.
I won't pretend to believe that labels don't matter. I am a firm believer in the power of words to shape our realities. The things that we say, the names that we call ourselves and others, they matter. They have real and tangible impact on how we move throughout this life. And disowning the 'sick' label isn't going to bring me closer to health. Disowning my disease isn't going to bring me closer to ease. But recognizing that these words aren't my only words, that these labels aren't my only labels, opens up a world of other spaces for me to search for ease. I don't only need to find ease in my physical body, because I am so much more than just that. When my disease is keeping my body without ease, I can look for it elsewhere. I can seek it in my other labels. In the other parts of who I am and what I do. I am more than just sick. And showing up and making space for those other parts of my life makes the dis-ease of my body a much smaller part of the overall equation. NOT an irrelevant part - don't get me wrong. But a more manageable part. A part that can be divided by other factors now to make a smaller fraction (I never in my life thought i'd be using math references in my writing... but here we are).
I am seeking ease. I am seeking ease in my learning. In my reading. In my speaking. In my practicing. I am seeking ease in my family. In my relationships. In the ways I spend my time. I am seeking ease in the little moments, like sitting here drinking tea, watching the planes take off and land, waiting for my three-hour delayed flight to arrive. I am seeking ease in sharing my story with you, in letting you into the parts of my life I sometimes feel the need to keep hidden. And I am seeking this ease to help me fight the dis-ease that exists in the other areas of my life. Because we all need all the ease we can get. Dis-ease exists for us all in some way or another. But I think the trick to healing, the trick to making it to the other side of this dis-ease, is not settling for a life defined by it. Look for the ease available to you in all the other things that you are, in all the other things that you do.
Here's to creating a life of ease amidst the dis-ease.
Lovingly,
Nicole