"The mass of men lead lives of quiet desperation, and go to the grave with the song still in them."
— Henry David Thoreau
"I'm friends with the monster that's under my bed
Get along with the voices inside of my head
You're trying to save me, stop holding your breath
and if you think I'm crazy, well that's not fair."
— Eminem (& Rihanna)
*for Josiah
We tossed our pumpkins and dismantled our white cotton spider webs today: another Halloween come and gone. It is usually my favorite time of year, especially now with our kids at the ages they are. The fall leaves still turning their singular hues of yellow, orange, and dark red, the crispness of the air making me feel somehow more awake and alive with each breath. Ghouls, ghosts, goblins, goofiness. The sounds of children, and laughter, and a light-hearted collective and creative collusion in that shared social ritual that is benignly scary and silly ... and somehow, for me, affirming and familial.
Despite some trepidation, we decided to host our annual Halloween gathering this year with our usual small band of close friends and their kids, given that the James and Grace love the party (as do we!) and James is doing very well at the moment: immunity levels are high for now, 10 days into the start of "Interim Maintenance - Episode I". We embraced the Star Wars theme this Halloween given its resonance in our household these days, and James was Chewbacca by day (he does a damn good impression) and a Storm Trooper by night. The paradoxes still abound. He has more energy and spirit than we have seen in him since things went downhill a few months (or was it lifetimes?) ago, and both Charlie and have noticed the marked difference in him now versus late summer before we even knew what was brewing.
He is tolerating this new phase of chemo well thus far, and on Friday had 5 hours of chemo back up at UCSF, and hopefully his body will absorb this next dose as well as it did the last one. He was feeling well enough to play soccer on Saturday (with the doctor's blessings) and ran his little boy buns off, kept right with the ball, scoring the only goal of the game and whooping with delight. He came to my chair gulping air and sweating with abandon, delighted and spent, and slightly concerned that he wouldn't be able to catch his breath again. I was catching my own breath with the same fear, but knowing he would return to his bodily rhythm again soon enough. And he did.
The passage of time is a strange thing to behold while we are going through what still feels like an alternate reality. James is growing and maturing as any 5-year-old would despite the goblins in his body, and each month brings a new capacity: he is becoming more and more brave in the face of the needles and the pokes and the terrifying anesthesia masks - or perhaps, simply more resigned. This phase (aka episode) lasts 5 more weeks, and then we enter into the gauntlet. Starting just before Christmas and lasting through February, the mortal powers that be will hit him hard with the heaviest drugs to date. That Episode = "Delayed Intensification", and then we start "Interim Maintenance II". I think I have mentioned how much I *love* these Orwellian terms.
Carrie and her girls came to visit us last week, and we borrowed the house of a generous friend up in Bolinas to cozy up in the rain and carve pumpkins for Halloween and play ample boardgames, even surfing a bit in the rough ocean. The kids found an old Ouija board in the toy cupboard, referred to innocently by James as "The Luigi Board". They repurposed a magna tile to summon the spirits since the plastic divining piece was missing, and wide eyed and giggling they called forth any ghosts willing to engage. James was transfixed, and very respectful, wanting to make sure that ghost "Luigi" knew we were friendly and just wanted to know more about his life. Apparently he was born in 1889 and liked soccer too.
James's newfound bravery and energy notwithstanding, Fear is still an emotion very much at play these days for all of us, and sadly we could not neatly pack it away with the rest of the ghouls in the Halloween boxes bound for the attic. James is having regular nightmares and his sleep is highly disrupted. Many times in the past few weeks we have heard him screaming in his bed and gone in to find him in a fugue-like state, half awake and half asleep, crying out and shaking slightly but still in the throes of slumber such that it is hard to know how to help. I rub his back gently, stroke his face, but I don't wake him out of the terror, given that I know he will awaken soon enough anyway and climb into our bed as he does several times a night now no matter how many sticker charts or incentives we try to provide. I think back to sleep training him and Grace as babies, and feel that familiar inner conflict of "How can I not go to him? My child needs me. He's scared." That is his middle of the night refrain when he is conscious enough to speak it - "But mommy, please let me sleep in your bed, I'm really scared." He has reason to be - how can we turn him away? Let him cry it out? It feels like the ultimate cruelty to leave our son alone in the night with his fear given what he has had to face over the last few months, and what still lies ahead.
"Give Up the Ghost" is a lullaby that cousin Amelia taught us several years ago that was her preschool favorite at nap-time. I love the melody, and it comes back to me now in these middle of the night moments when I am trying to coax James back to sleep. But I can't sing it to him anymore - despite the soothing hum of the song, someone told me that the actual expression means to die, to let go of life. To embrace whatever is beyond it. So while I can't bring myself to sing the lullaby given whatever superstitions of my own I may harbor, I can focus on a different meaning. I can choose to let the Fear come, to withstand it, to befriend it almost, and to let it subside. I can help him do the same. Give up the ghost - let whatever is causing you fear exist and emerge, let it come to the surface and then confront it and allow it to move through. That is where real, sustainable courage is built.
I mention the passage of time, and have been cruelly reminded that while we endure this challenge, Life itself does not stop, and apparently we are now at an age where new news is often hard news. So while this Halloween may have been an occasion to befriend the ghosts and host the monsters, and help us all face our fear, there have been a few other morbid causes for reflection this past month since my last post. Charlie's beloved uncle John, Jim's only brother, died one month ago in Spain hiking the Camino de Santiago pilgrimage - also known as St. James's Way - which he said he would be doing in James's honor. His wake and funeral were this weekend ... and we could not be there given James's situation. On another tragic note, a mutual friend of ours from college committed suicide two weeks ago. I don't know the full story, and I hadn't been in touch with him for a long time. He had a wife and a beautiful 2 year-old daughter and he jumped off a bridge in Boston into oncoming traffic on Route 128. He had been in touch with other mutual friends just days before, and no one suspected. My mind goes to him regularly, to the despair he must have felt, to the loneliness that must have been his reality to not reach out for help. I wonder if whatever inner turmoil he felt was actually a sign of something right with him in this crazy world, a sensitivity or reaction to how chaotic and disconnected and disjointed things can feel these days, rather than an isolated state of mind so easy to label as mental illness. I wonder about his own Fear, and if there was any way any of us could have helped him through it. I think of many of the men I have been hearing about recently who are hiding significant bouts of depression, and desperation, and feeling shame in the face of it. At least cancer is easier to share, your support system can rally around you, no reason to keep your fear quiet in the face of a beast less taboo.
I hate to continue on in this vein, but my college roommate at 38 was just last week diagnosed with triple negative breast cancer. She is trying to determine how best to tell her own young children what this means when she doesn't even know herself. How to provide them with security and stability in the face of Fear and uncertainty that she herself has to cope with and manage. I think of her constantly, on her own cruel journey now. Another blow: a very close family member whom I love dearly is going through an unexpected and heart-wrenching divorce, feeling blind-sided and shell shocked, and I think of him all the time: facing the unknown now, foundation shaken, and with kids of such young and tender ages. I remember acutely that loneliness as a child, that shaken sense of belonging somewhere without question. The questioning of what home meant now - an unknown with far too much weight for a child to have to contemplate. That, to me, is Fear. The short movie we just showed Grace and James called Paul and the Dragon about a young boy with cancer, and James's innocent question at the end ... "Mommy, do I still have cancer?" Yes, my son, you do. I want to spare you my own Fear in answering that question, so I will manage to keep my voice from shaking as I answer, and I will believe with all my heart that You Will be Fine. But I feel your Fear. I bear it with you.
I think of the depth of loneliness that so many people must experience or hold at bay on a daily basis. I want to solve it, salve it, create a balm to not just cover it up but to truly help people through feeling despair, fear, loneliness. The only way I know how to do that is to connect, and to offer my own fear as an example to help others not feel quite so alone: a bridge and a buoy to grow through it and beyond it. Not that I myself am anywhere close to the other shore. But to be clear - despite these recent challenges, losses, surprises we did not anticipate, we are still experiencing a lot of joy and laughter in our lives these days. It is not all doom and gloom - far from it. All I know is that at present, I have both more fear and more courage than I have ever had before in my lifetime.
Oh, Luigi. We hardly knew ye.
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