I’m still doing radiation every weekday. I had been doing chemo pills as a supplement to radiation, but I’m on a break from those now, because my platelet counts are too low for the chemo.
I’m still adjusting to my changing brain. I’m not having any new symptoms, but I still have mild headaches at night, my thinking moves slower, and I sometimes mix up my words. I especially mix up gender pronouns, like him and her. Maybe my brain has an unconscious drive for gender fluidity. I feel more compassion for the ways that my brain, and all of our brains, keep changing to become new brains. Knowing that there are tumors on both the left and right sides of my brain, I’m more aware of how we are each in the midst of physical and internal transformation. As a part of the new “me”s that I keep becoming, I’ve felt more restlessness in my identity and purpose, more frequently unsure what is mine to do. Having probing conversations about the meaning of life is something my brain doesn’t always have the ability to do. I’m not ready to give it up, though!
For those of us with terminal or chronic illnesses, I think that navigating constantly changing, and sometimes dissolving, purposes, can be one of the most complex parts of serious illness. I deeply believe that each of us have distinct gifts and contributions for any particular situation, but it can be quite disorienting and takes a lot of creativity and initiative in the midst of destabilizing illness. To move from a full-time job to reduced abilities that need care can take a lot of re-adjusting. I feel lucky that a lot of my work has been doing self-employed, volunteer, collaborative, creative work that has been outside of full-time jobs. I think that has been a helpful preparation for terminal illness, yet after my two surgeries last month, I have felt more rudderless. I’ve started working with colleagues on events we’re planning, but have felt stuck in knowing how much capacity or reliability I have to follow-through on tasks for that day, or in the coming months. I’m grateful for colleagues that can carry things through when I can’t.
Losing feelings of purpose and identity are some of the main things I fear. I’m also curious who I am without those identities and abilities.
I’ve been reflecting on the practices I need to continue to cultivate my purposes as my abilities change. Some things that I seem to need are:
A foundation of quiet listening, even when I don’t have confidence or clarity where I’m headed that day. I continue to sit and watch the river, trees, and birds for about two hours a day. When I don’t feel motivation or direction for the day, I find the river still helps steady me, and provides a foundation where clarity and direction can emerge. Some new direction might show up, or the river might just help settle me.
Regular rhythms of meaningful connection. I’m dependent on cuddling with Jenny each day, seeing my friend Janne each week for breakfast, weekly dinners with friends Emily and Elizabeth, having times of meditation and prayer with Beth, Bob, and others. Without these rhythms, I’m afraid I might float away.
Wash the dishes. After my surgery, I wasn’t able to wash dishes, take out the trash, or do many other practical things for our house and family. I can sometimes have quite an overdeveloped sense of responsibility. I can also be a slacker sometimes. After I recovered enough to be doing things after surgery, it was a time that I started doing dishes again that got me out of my funk, and feeling more engaged and purposeful in the world. Doing practical things increased my confidence about other purposes.
Find joy: I get a unusual amount of joy from my morning spinach/fruit smoothie each morning, and my afternoon chocolate and nut smoothie. Before my friend Tim died a couple months ago, we compared notes about our shared smoothie appreciation. There’s something to it as a palliative care treatment. My puritan blood needs to consciously seek out pleasure.
My understanding of my purpose today is to make use of the ways my brain and health roller coasters help me move between and visible and invisible worlds, and find ways to share and listen to some of those thin places. Lately, I’ve felt drawn to others who are feeling intimacy with death, for themselves and others. Shortly before she died, my Great Aunt Ruby would come in and out of consciousness, while saying, “it is so wonderful...I had it wrong, life is about love.” My aunt, and others, keep pointing me toward the possibility that these thin places can be an entry that beckons us all.
My hope is that I can be a part of larger forces that use me as an instrument towards wholeness, even when I don’t know what my identity or usefulness is. While I want to grow, create, and contribute--the primary motion I feel I have the ability to do is receive with gratitude. I’m reminded today how much I need to practice cultivating my own evolving sense of purpose, not as a static direction I follow, but as an ongoing relationship that continues changing.