March 21, 2020 at 07:50PM
I wish this feeling weren’t so familiar; life feels dangerous and unpredictable right now. I’ve been here before, 12 years ago when I exited the life I’d planned for, thinking it was just a detour. My young son, Mason, was diagnosed with a brain tumor that was impossible to remove, which hemorrhaged when he was 13. When he was to finally wake up, he’d have to learn everything all over again. He’s 22 now, undergoing yet another round of chemotherapy, and we don’t know what’s next.
My family has obviously lived outside the safe zone for a long time, and that’s taught me some pressure-tested strategies to stay sane in unpredictable scenarios. Living with uncertainty, and finding the reality between denial and catastrophizing, requires practice and support. But it is possible.
1. Don’t wait for change—accept where you are.
This was mostly wrung out of me after 11 of Mason’s surgeries. It felt disloyal to have personal needs, much less wants. I would sleep, exercise, breathe…I was “fine.” But it wasn’t until I admitted how afraid and overwhelmed I was that I felt a shift. Telling the truth and admitting to myself where I was at, and starting from there, were essential. You don’t have to wait for things to get better before you do.
2. It’s OK to be afraid.
When we discovered Mason’s tumor had grown again, I was afraid. Reassurance is helpful, but it has never helped to hear “don’t be afraid.” In my experience, this advice comes from someone uncomfortable with my emotional state. This is not a person who is able to help in that moment. So, I move on to someone who can say, “No wonder you’re afraid. Can I get you a glass of water?”
Acknowledge and accept your feeling, while also recognizing there’s a point when planning and preparation can devolve into obsession. Phone a trusted friend, and talk about what’s happening, what’s real versus fear, and what action, if any, can be taken.
3. Find moments of stillness.
I’ve got photographic memories of linoleum floors in six hospitals; someone once told me to “be where my feet are.” Pausing and being mindful can help get out of your mind and back in the moment. Then, you can tackle what’s next (not the entire to-do list).
I often catch myself mentally rewriting the past, could-have’s and should-have’s. And the result is always the same: nothing changes besides my lack of presence with “now.” Similarly, I try to master the future by considering looming possibilities, as if the preemptive anxiety provides extra credit when the real thing come about. This is when I’ll focus on the ground, take a slow, deep inhale, and say that simple prayer, “help.” At times when I couldn’t leave Mason’s bedside, this is what I learned. The root of the Hebrew word for spirit is breath or air, and in every moment, we have access to it.
4. Be there for someone else.
Connection makes it possible to get through days that are too hard and too long. I’ve found that the surest way to feel acceptance and love is to let it flow through me without stopping to judge whether someone is worthy or not. It’s easy to give to people I’ve chosen as my friends, and the family members who I love the most. Yet every interaction is an opportunity to put kindness into the world, instead of more irritation and anger.
We can practice in small ways, like letting others in front of us in traffic, and paying extra close attention when someone helps us (be it a a sales clerk or a doctor). Once in a while, a friend might apologize to me for bringing up her struggles, saying “it’s nothing like what you’re dealing with.” But let’s not compare suffering—we all deal with our own challenges. And ironically, sometimes it’s nice to have a break from your own and help with someone else’s.
6. Faith is not knowing, but trusting.
Being jolted by a crisis I could never imagine or plan for allowed me to access the necessary strength and trust to deal with it. I did it once, then again. This is where faith comes in—spiritual and otherwise.
My friend Joan always said, “You’ll know what to do when the time comes.” (If you don’t know, then the time hasn’t come yet.) We plan for what we can, but much of what lies ahead is unknowable. But I’ve dealt with the unknowable before, and so have you. I mostly don’t feel brave and prepared, but maybe that’s what courage is.
7. The Improbable Good.
I thought I knew about God. I was raised in a religion that taught me If I was a good girl, good things would happen. So what does it mean when something really bad won’t stop? I couldn’t fix my son, no one could.
“Look for the helpers,” Mr. Rogers advised in times of trouble. So while circumstances didn’t change, I did. I began to notice the improbable good, even on the worst days. The nurse’s aide coaxing a laugh from mostly silent Mason; sun through the window; therapy dogs. I call this source of love and strength “God,” though I’m not sure the name matters so much as the free flow of kindness. Some days we’re the helper, and others we surrender to our limitations and receive. Grace shows up for us, through us—and sometimes despite us.
If I were given the chance to speak to the younger me, on the afternoon of Mason’s diagnosis, I’d tell her, “You’ll be okay. It’s just that your definition of okay might need to change.” So, just for today, don’t spend hours reading about the worst things that might happen. Know that safety and security can’t necessarily be stockpiled, but rather can be found deep inside. Be patient with yourself, lean on each other, and trust in better days to come.