I wish this didn’t feel so familiar. Life feels dangerous and unpredictable, what’s known and what’s safe morphs into something unrecognizable from day to day. I exited the life I’d planned twelve years ago. I thought it was just a detour. My young son was diagnosed with a brain tumor, a low grade, stubborn roots under the sidewalk kind of tumor that was impossible to remove and difficult to tame. “It is what it is,” Mason would say, and despite chemotherapy we cultivated an uneasy peace moving from one MRI scan to next. That is until Mason’s tumor hemorrhaged when he was 13, causing a massive brain injury and changing everything. He wouldn’t wake up for weeks, and he’d have to learn to walk, talk and eat all over again. Mason is 22 now, undergoing another round of chemotherapy. We don’t know what’s next.
My family has lived outside the safe zone for a long time, but just like NASA brings back useful discoveries from space (foil blankets and portable computers), I’ve found some pressure-tested strategies to stay sane and sometimes calm in unpredictable atmospheres. Living with uncertainty and finding the reality between denial and catastrophizing requires practice and support, but it’s possible to do it and even experience joy now and then.
You don’t have to wait for circumstances to get better before you do.
This was mostly wrung out of me after 11 surgeries. It felt disloyal to have needs much less wants. I would sleep, exercise, breathe when or if... I was fine, word stretched thin and threadbare. But it wasn’t until I admitted how afraid and overwhelmed I was -- how I didn’t think I could do _____ that I felt a shift. Telling the truth admitting exactly where I was and starting from there was essential.
Step off the spinning wheel of obsession
My brain is wired to anticipate all the awful things that might happen. I have never once defaulted into thinking “It is so great that life is unfolding in this weird unpredictable way. How fun!” On the upside this means I am well insured with a stockpile of canned soup and toilet paper. But there’s a stress point when planning and preparation devolve into worry and obsession. This is a phone a friend moment. I need someone who is not currently terrified to filter my perceptions. What is happening today? What’s real vs. fear? What action, if any, can I take right now?
It’s okay to be afraid.
When we discovered Mason’s tumor had grown again, I felt afraid because…it was scary. Reassurance is helpful. But it has never ever helped to be told “don’t be afraid” by another human. Usually this advice comes from someone who is 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?” My dad once said, “If you can’t have fear and faith, what’s courage?” My faith isn’t a manifestation so much of what I feel, but rather what I do.
Be where your feet are
I’ve got photographic memories of linoleum floors in six hospitals. Someone told me to be where my feet are. I paused and focused on my shoes. It’s a strategy that gets you out of your whirling mind and into this moment. Then do what’s next, not the entire to do list. Send the email. Complete that form. Often I catch myself mentally rewriting the past, what I should’ve done that could’ve prevented this, whatever this is. The result is nothing changes but I’m distracted and not present where I’m needed right 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 where I cultivate a gentle voice in my mind, “pink Nikes on hard wood.” Slow deep inhale. And that simple prayer, “Help.”
Security can’t be stockpiled.
I am among the first at Costco at the hint of a crisis. I buy what safety I can. I do the same thing with information, convinced that more will insulate me against unknown and scary outcomes (at least I won’t be hungry/ at least I won’t be taken by surprise). When my son was first diagnosed we found trusted advisers, brain tumor experts. Then I did the deep dive on Google, over and over again. Friends intervened. Just for today, don’t spend hours reading about the worst things that might happen. We need a trusted source, an alternate to information inflammation. This is our challenge in the world right now. As crises develop by the minute, I’m reminded that my safety can’t really be stocked in a go box. When security is so tenuous in the outside world, I have learned to go deeper inside.
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 annoyance and anger. We can practice in small ways. I regularly let others in front of me in traffic (though my reflex when cut off is still to mutter and curse). I try to pay attention when someone helps me – a sales clerk, doctor, nurse – to look this person in the eye and see them. I try to be a good friend. Once in a while a friend apologizes for bringing up her struggles. “It’s nothing, really, not like what you’re dealing with.” Talk please. It’s a reprieve, a break from my problems. And it’s not nothing, we each have our challenges.
Give yourself a break.
In moments of overwhelm, my default is to try harder, skip lunch, avoid exercise and hide from people who might encourage me not to do this. It’s not helpful. I had to root out an old idea: if I take care of myself (laugh, enjoy, relax) I am not being loyal to whoever is in crisis, or appropriately panicked for whatever danger is looming. Maybe God really will smite me for my inattention to detail and brazen joyfulness. Also there’s the illusion that pre-emptive suffering is like a practice SAT test, that all the better students have prepared themselves for every scenario. We get more accomplished when we look away from the problem even for a half hour. Walks help, fresh air, endorphins, lunch, a cup of tea. There have been times when I wasn’t able to leave Mason’s bedside, this is where I learned to inhale, slow and deep. Exhale slowly. The root of the Hebrew word for spirit is breath or air. In every moment, we have access to this spirit that animates us and the universe, the force that brings daffodils through the mud every spring.
Faith is not knowing but knowing
Jolted by a crisis I never imagined and couldn’t plan for, I somehow accessed the necessary strength and knowing to deal with it. I did it once, then I did it 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.) I plan for what I can, but much of what lies ahead is unknowable, climate-wise, virus-wise, health insurance-wise. Still I’ve dealt with unknowable before, so have you. I mostly don’t feel brave and prepared. But maybe this is what courage feels like.
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. But what does that mean when something really bad won’t stop happening? I couldn’t fix my son, no one could. I prayed, often very angry. I meditated while scared thoughts zoomed around my still body like mosquitos. I found books by people who weren’t afraid to ask questions for which there are no easy answers. I told the truth about my doubts and fears. As philosopher Paul Tillich said, “Doubt isn’t the opposite of faith. It’s one element of faith.” Platitudes don’t hold up in inclement weather. I had to ask myself, “what can I believe in?” Circumstances didn’t change, but I did. I began to notice the improbable good, even on the worst days. The neurosurgeon answered his own phone right when we needed him. The nurse’s aide coaxed a laugh from mostly silent Mason. Sun through the window. Therapy dogs. “Look for the helpers,” Mr. Rogers advised in times of trouble. This is where I see good and grace. I call it God, the source of love and strength big enough – so far -- for any circumstance. I’m not sure the name matters so much as the free flow of kindness. Some days we get to be the helper. Others we learn to surrender to our human limitations and receive. Grace shows up for us, through us and sometimes despite us.
If I were to speak to the young mother who was me on the afternoon of Mason’s diagnosis when the chasm opened in the earth separating the future from the life I’d planned, I’d tell her, “You’ll be okay. It’s just that your definition of okay might need to change.”