Developing a Rich Inner Life When Chronic Illness Puts Limits on Your Body
In Gabor Maté’s book “When the Body Says No,” he talks about the onset of some illnesses like cancer and autoimmune diseases as having a traceable connection to the propensity of “stuffing” negative emotions like fear and anger and the compounding toll that takes on the body. In it, he discusses Stephen Hawking‘s experience with ALS. In particular, Maté is looking at Hawking’s ability to survive the ALS diagnosis so much longer than most who are diagnosed with it. In his analysis, Maté says,
“Given the nature of ALS as a disease that destroys the body while leaving the intellect intact, an abstract thinker was in an ideal position to ‘live a life of the mind.’ Unlike the athletic rock climber and former marathoner… Hawking did not see his body’s deterioration as impairing the role that he chose for himself.”
Having his bodily needs (feeding, cleaning, dressing, toileting, etc.) attended to, he gets on about the business of doing science and writing books. While Hawking is, of course, frustrated by the limitations of his body, such as how much easier it is to do research with arms that are functional, he says that he believes that part of the reason that he survived with ALS so long is that he has such a vivid mind, that he doesn’t identify much with his body, and lives so fully in his mind.
I find that description of Hawking’s so interesting to consider in the context of chronic illness. I, like most of us, do not have a staff attending to my bodily needs – so that puts me in a different category than Hawking right out of the gate. However, how can we lessen our suffering by learning to identify less with our physical experience? What would that even mean?
I recently ran into a friend who has been severely impacted by chronic illness. I’ve been on this journey almost a decade and she’s been in it about five years. Talking with her about her current circumstances, it is clear she is overwhelmed, depressed, and unsure that her current quality of life is worth it. And I get it. I suspect most of us have wrestled with the question – what am I living for? Will it always be like this? Is this kind of life worth living for?
Reflecting on her situation, (I’ll call her M) one of the distinguishing things about M is that coming into illness M was an athlete. She played D1 ball in college, she was always fit, she lived in and identified heavily with her physical body. My story is different. I was always artistic. I had stretches of time when I danced or was into hiking, but being athletic, coordinated, or body-centered was never my gig. I’ve always been a head or heart-centered person.
When I think about how it is to deal with the loss of so many identities as it relates to chronic illness and how it transforms our circumstances, the body is, for most of us, one of the first things to go. While my mind isn’t the same as it was, and there are ways it is radically diminished, it can still be a place of refuge for me. In acknowledging all the losses that have occurred – identities, relationships, abilities, future plans, among other things, in order to function and carve out some mental health and satisfaction, it has become imperative for me to cultivate a rich inner life. Like any practice, this has taken time to develop, learn about how to do it, and make changes over time. Also, like a practice, having a rich inner life doesn’t just happen. I must make time for it, prioritize it, and adjust my habits as I learn what works better. Here are some of the ways I’ve worked to build my inner life:
Even if I can’t produce coherent thoughts or meaningful dialogue, I can usually manage some input in the form of podcasts or audiobooks. That means I can get fed. Ideas and stories, input and perspectives, all can come to me in my darkness and solitude. It’s remarkable what can inspire and find me. No, it isn’t the same as being surrounded by people every day and having rich conversations that build on relationships, but it can still be rewarding and satisfying. I can travel and be transported from the monotony of my life. Often, I find that I’ll learn about something, for example, the idea of “dead reckoning” from a podcast. Then I allow that to take me on an exploration of other podcasts on the subject as well as other fiction and non-fiction books that were inspired by the subject matter. By the time I’ve exhausted that list, it’s likely that one of those sources has led me to a new topic of interest and I’m on to learning about the stages of a butterfly’s life or aboriginal life in the Australian outback.
Many years ago, I read and participated in Julia Cameron’s famous book “The Artist’s Way.” There are two habits from her book that still serve me well now in tilling the soil of my inner life. The first is morning pages. This is a free-write exercise intended to be done first thing when you get up in the morning. Her instruction is to do three longhand pages without thinking or planning what you mean to say. You are not “trying” to write about anything. When I find myself in a rut or feel the clouds of depression clinging around the edges, morning pages are a dynamic way to jumpstart change. It’s remarkable how having a brain-dump can clear away some of the mental cobwebs and lead new clarity. My hands aren’t always well enough to write out the pages long-form, don’t let the method of writing keep you from this helpful practice. Commit to trying it for a minimum of five days in a row, first thing when you get up in the day, and see what new things are in store. You may find topics emerging in your writing or later in your thoughts that you wouldn’t have come to without opening this channel.
Finally, the last habit I’ll mention, also from Cameron’s book is the idea of artist’s dates. These used to be physical dates that I’d take myself on, places I’d go to that would move or inspire me – help me think creatively, see a new vantage point, or get my creative juices flowing. Examples of places I might go on my artist’s dates: the Japanese gardens, an art gallery or museum, local shops that sell creative jewelry and crafts, holiday window displays, and places or events that help me have my own creative leaps. I now “shop” for artist dates online. I set aside time to specifically look for threads on Reddit, boards on Pinterest, designers’ websites to look up. I subscribe to magazines that help me be immersed in subjects that light me up and think of things from new perspectives.
Each of these methods feeds the others. This often leads to thoughts that come up in my morning pages, or a podcast idea to search, that leads me to an article to pin for later, etc. That’s how I sustain the flow of ideas and information. Things like a gratitude practice and a contemplative or prayer practice cannot be discounted.
A rich inner life is not a given. It takes work to cultivate, but it is rewarding and helps me feel engaged and connected when there are otherwise large swaths of time when it is easy for me to feel mostly depressed and isolated. I do not claim to be, like Hawking, living a “life of the mind.” There are some days that are body only. But I do work to feed my inner life and develop a world there that is a place of refuge. What about you – what’s inspiring you? What’s feeding your inner life? What helps you stay well on the inside?
Getty image by Bulat Silvia.