I met a woman a few years ago who had suffered a severe concussion that resulted in brain injury. About six months after her injury, she updated friends on her condition.
Her window of cognitive capacity had increased to four hours; after that, she said, she was physically and mentally wiped out. A previously busy and involved working mother, she now rested most of the time, and had to make constant tradeoffs. For example, if she balanced her checkbook or called a friend, would she be able to manage the next part of her day?
“My doctor describes my cognitive capacity like a gas tank,” she wrote. “Mine is smaller than it used to be, or it burns up more gas to do the same tasks I used to be able to do several of.”
I was almost 18 months out from John’s death when I received her update, and I recognized myself in her description. I was fighting to maintain my involvement in the world around me, but felt increasingly unable to give my children what they needed, unable to focus on work, overwhelmed by my to-do list. My productive capacity had simply shrunk. I gradually conceded my volunteer work, much of my social life, and finally my professional work.
And that was before cancer. I joked to a friend the other day, “I’m so low on Maslow’s hierarchy[i] I can’t even remember how to spell Maslow.”
Her lament resonated. “It’s a compliment,” one woman responded, “and yet it’s not - because it makes us feel like they’re not seeing the real us, or the real pain we are in.”
Others wrote that they put up a front of strength. “It’s a lot less awkward than crying,” someone said. We don’t want to show the mess behind the scenes.
And it is a mess. It’s a mess of long nights, fearful children, short-tempered parenting, anger and guilt, and straight-up sadness. We’re not strong, we’re automatons, living at the base of Maslow’s hierarchy.
Things got better over time. Relinquishing responsibilities, focusing on myself and my kids, running trails and races and treadmills, developing a new relationship – all those things helped. But we never did settle into a new normal. Nights were, in a word, impossible.
The exhaustion and stress probably helped give cancer a toehold, or a breasthold, if you will. But perhaps cancer was also a rescuer. We were lifted up and out of our environment, pulled from most of our material possessions, from our home and our schools and our friends. I was plucked out of the din of my life and into quietude. My children were deposited in different locales where they are getting the undivided attention of the adults around them. Both kids learned to go to sleep on their own again.
There is nothing normal about our current situation, but it’s functional, and I believe the space has given us each an opportunity to get stronger.
We celebrated Alder’s birthday last Wednesday by bringing crappy cupcakes to school (the label promised no trans fats, but the ingredients list was an ominous two inches long). The kindergarten teacher put a ball in Alder’s hands to represent the earth and lit a candle to represent the sun. She put the candle on the floor and turned out the light. Alder walked six circles around the candle as his class sang, “The earth goes around the sun, now Alder is one,” and so on, up to six. He beamed shyly as he orbited the sun, soaking in the love and attention of his teacher and classmates.
Friday night I picked up Rosie at SeaTac, looking three years older than she did last summer, striding off the jetway – unaccompanied, confident, competent. She got up the next morning at 6:30a.m. and played Legos with Alder until I got out of bed.
These are the moments when you fall in love again with your children, when you feel that they are the most precious, vulnerable and beautiful beings in the universe. My heart aches with love and suffering for them. I think again of the Jewish saying, “Keep two truths in your pocket and take them out as fits the need: for my sake was the world created, and I am but dust and ashes.”
On the treatment front, I’m midway through radiation and have a mild sunburn but no great distress. I am slowly learning to cope with life on Letrozole through a combination of dedicated – if relatively mild – exercise, L-glutamine, acupuncture, clean eating and patience. Each morning it feels like I’ve been body-snatched by a 90-year-old, but if I can manage to get out of bed and take the first few steps, the next steps are easier. Another allegory for life, no doubt.
I have the great fortune of a bombproof support network and a mostly optimistic disposition. I am describing the bleaker side of life here in part to give voice to those who are struggling behind a mask of strength. Be kind to those you meet; you never know what challenges they are facing.
[i]Abraham Maslow (turns out I did spell it right) was a psychologist who posited that humans first need to have our basic physiological needs met, then our needs for safety, and so on in order to focus on creativity, problem-solving, etc. See below. For a while there during chemo I wasn’t even achieving excretion.
And a few pictures....
|Exploring at the Nature Conservancy's Foulweather Bluff Preserve.|
|We had a great visit with Grandma Mary, who loves birthdays.|