After reading poems from “The Body Lives Its Undoing”, and presentations by collaborators at Town Hall on Wednesday, September 18th, I opened up the conversation to the audience. The questions were penetrating and while I did my best in the moment to respond, later that night I had further thoughts that I want to share.
How to keep hopeful when struggling with an autoimmune disease
A difficult question was posed by someone living with an autoimmune disease; she asked how to deal with hope, specifically, how to keep up hope when one is in pain and seemingly closer to despair. At the time I answered by recalling my struggles with pain and despair as a parent of a child with an autoimmune disease who, when in the thick of her treatment I had no knowledge of whether she’d get better, I also despaired. I fell off “the Hope wagon” often. And I came to think this was going to be a wild roller coaster ride and the resulting stress might sicken me in some way too.
Eventually, I found a book by Pema Chodron, a female Buddhist monk, called, “When Things Fall Apart”. She spoke of hope and despair as being two ends of a continuum, and that being on either end was like being on a see-saw. The task, as she put it, (and I believe this is our task as humans living in a world where suffering is everywhere), is to try and hold both realities: not to be too high on hope nor too low with despair. Of course, this is not an easy task.
What I wished I’d included in my response that night was this: I finally found if I focused on what was right in front of me, my child doing what she could do, or being who she was in that moment, I saw a bigger picture. Her illness was not all of who she was. This allowed me to relax and enjoy the precious moments when she was drawing or we were beading necklaces or she walked half way up the block.
Now, I wasn’t the person with the illness as the young woman with the question was, but I wished I’d asked her to find one thing she that either gave her some pleasure or relief, however momentary, from her pain or lack of hope. Maybe she made herself an excellent cup of tea that morning, or she heard a piece of music or song she liked. Maybe she walked a step or two without pain, or a friend called to see how she was doing, even if she felt badly. These are seemingly small things, but important to recognize. I think each moment is truly what we have and when we focus on the future, we can lose hope and miss what we do have.
And while I might say not to dwell on the past I also believe that being able to grieve our losses, lost physical and sensate abilities, is crucial to finding more of what our “new normal” looks and feels like. It is not that we grieve these losses just once and we’re done with it, but allowing grief to come, and move through us, also allows room for experiencing joy.
Finally, I thought of my friend Lisa Sniderman, aka Aeode, an adult living with Dermatomyositis. She has found ways to pursue her art even through her struggles with pain and lack of stamina. She has lost her former work as an environmental consultant but has followed her passion for writing and performing music. She has written a book about her journey from health to illness and from darkness to light called, “A Light in the Darkness.” And she gives others a chance to voice and record their stories about finding creative outlets in the midst of their journeys with illness. So many people are writing stories, poems, making paintings, films, or writing music about their journey as patients or caregivers of people living with chronic illness. This “living with” is important to say out loud. Maybe reading or hearing about another’s experience can make us feel less alone. Maybe there is hope in just knowing we are not alone.