“What is this about?” she asked me. I’d gone from having no breathing issues to anaphylaxis multiple times a day, from travelling and researching to being housebound. My therapist believed this stemmed from emotional issues, my doctor recommended staying calm, an immunologist recommended meditation. I was getting a massage and the massage therapist, too, wondered what tensions or trauma I might hold in my body that would cause these issues. “What is this about?” she asked, “I mean, everything happens for a reason.” And there it is! The most useless thing you can say to someone facing trauma, grief, or illness. Not just useless, but damaging.
What was it about? A bite, bacteria, parasitic infection, and medical neglect! If I’d been able to get Lyme treatment when I’d started asking about it months before, none of the level of fallout that was happening would have ever started.
I needed medical expertise, I needed the support of friends who would ensure chemical reduction so that I wouldn’t be isolated…needs that take acknowledging that something not okay is happening. When we put the responsibility on someone for horrible experiences being part of their spiritual path, it is too easy to release our responsibility to help make change in others’ lives and in the world.
I’d been meditating and doing yoga for years and been pretty damn happy with my life before the illness hit. I felt very much that I was on my path and I still believe that this was true (breathing, being able to breathe is so my path!). Questions as to how this illness (stemming from medical neglect and a tick I’d never wanted to encounter) was part of my spiritual path, began to read just as victim-blaming.
However, to claim the illness didn’t have spiritual implications for me would be far from the truth. The illness seriously shook up my sense of spiritual connection and for me that is a very alienating thing. Lyme does this. It can make a person feel foggy and far away from themselves. It can make it hard to access feelings of love or joy or even a very basic sense of being “real” (it can also cause other symptoms such as really weird visual distortions and sudden paralysis). Needless to say, this shook me up and “everything happens for a reason” platitudes just made it worse. I stopped meditating. I needed answers but the question became only, “why can’t I breathe?” which is limited in its spiritual scope. When I looked for G-d, spirit, meaning, or a sign from the universe (call it what you will) for why this was happening, I only came back with a sense of being alone in the struggle.
One piece of the puzzle that has helped me to move away from this awful sense of aloneness came from a morsel of wisdom in the BBC series Call the Midwife. The main character had just undergone a huge loss and was having a crisis of faith, asking what God (again, substitute the word, or not, as it works for you) had to do with it. The nun she is speaking to replies that God is not in the event but in the response to it–in the love that is shown and the care that is given. I cried when I heard this and immediately watched the scene again. While it may be surprising that a yoga practicing, Jewish, Unitarian found spiritual inspiration from a moment in a show that took place in a convent– I’m good with it.
I hold that the illness is a wrong and horrible thing in my life, but I find grace in many of the responses to it. For example:
- Living near woods where my pain is reduced
- A spouse willing to pool any resources we have to help get me well
- In-laws who have supported us
- Friends who helped get me to appointments
- Loving animals that are comforting when my symptoms flare
- Slowly finding a treatment plan that helps.
This is not a call to be grateful for everything or to find joy in every circumstance. For me it is about changing where I look for meaning and connection: the response, not the event. Of course, many things have helped to turn this spiritual crisis around for me since then, not the least of which is medical treatment that has reduced the bacteria and the cloud of disconnection it creates. I do not claim that spirituality as my cure-all, but it broke up the feeling of being set adrift and that is no small feat. Looking for meaning in the illness was a bleak and lonely experience for me; but when I look for G-d in the response to it, I find some of what I now call Pockets of Grace.
I also find this re-focusing useful for the implications it has as to how we can respond when the s**t goes down in other people’s lives. What if it really isn’t our job to have anyone see their circumstances in a particular way? What if our responsibilities lie in how we give care and show love? I’m not saying that you have to find Pockets of Grace in your own life when crises hit, but I am suggesting we try to be that when other people are in crisis. You can feel however you feel about the turmoil you are in. Maybe folks around you can manifest some freaking grace in the struggle by showing up with cookies while you cry or rant.
If you have a chronic illness, loss, or trauma in your life, my wish, if it serves you, is that you find release from searching for the meaning of it. My wish for all of us is that we make meaning for each other in times of crisis through the love and care of our responses.