War is often the preferred metaphor for “battling illness,” and it can be helpful and motivating to some people. I am not one of those people.
My name is Elizabeth Honan Amber (she/her) and I was born with the genetic illness Cystic Fibrosis (CF). Though illness has not defined my life, it has definitely informed it. I spent much of my childhood and early adulthood trying to find fixes, healings and cures so I could “get on with my life.” But as I got further into adulthood and CF wasn’t budging, I realized that I could not continue to relate to my illness through a battle lens.
I was mentally and spiritually exhausted most of the time from feeling like I could only focus on a cure, or healing. I began to realize that I needed to be able to find a way to live with it so I could think about and pursue the other things that life had for me, like a finding a calling, embedding myself into a community, growing as a person, and having intellectual and life giving conversations.
I decided that if being at war wasn’t working, then what would it look like if I went the other way entirely and made friends with this disease? Could I see it as something that was part of me, rather than an invading enemy?
This challenge felt radical. The tension I was up against was that if I “made friends,” would that be accepting a kind of “defeat?” I decided I was willing to lean in and find out. I wanted to explore new narratives of what living with a chronic condition could be beyond fighting and survival. Maybe CF could just be something I lived with, peacefully, and compassionately?
I’m happy to say that what has evolved for me over the years has been a softer and more expansive language that doesn’t paint me as an isolated soldier fighting a war I ultimately cannot win. I’ve developed an ethic of care for my body and life that doesn’t see my needs as inconveniences or shameful, but simply normal things that connect me to my humanity and my community.
Don’t get me wrong, it’s still a challenge, my disease has progressed and I have more limitations on my energy and breathing than I used to. Currently I’m waiting for a double lung and liver transplant. But even with those realities there is so much more to see than my illness, hospitals and rigorous routines. There are relationships, spiritual growth, funny stories, and a million art prompts to follow. As an ethic I don’t hold my breath until life gets better, because if I did I would miss everything that I can still enjoy; I don’t spend my time fighting, but rather, living.
When I look at my life now, including the realities I have to navigate, I don’t see a battlefield, rather, I see a lot of “scope for the imagination:” an ever changing landscape stretching before me that I choose to stay curious about. That view is a huge comfort and source of energy for me.
“Or This Way,” is my offering of writings and work, that hopefully invites others think about and hold illness differently. I want to add to and expand the conversation, as well as challenge the imagination to move beyond only asking, “what is wrong,” into, “what is your body, mind and soul asking, and how are you feeling called to respond?”
If you do find inspiration or thought provoking ideas, I’d love to hear from you!