This being human is a guest house. Every morning a new arrival. A joy, a depression, a meanness, some momentary awareness comes as an unexpected visitor. Welcome and entertain them all! Even if they are a crowd of sorrows, who violently sweep your house empty of its furniture, still, treat each guest honorably. He may be clearing you out for some new delight. The dark thought, the shame, the malice. meet them at the door laughing and invite them in. Be grateful for whatever comes. because each has been sent as a guide from beyond.
— Jalaluddin Rumi (1207-1273)
The Guest House
Happy New Year to us all. I must confess that while I am glad to leave 2016 behind, thus far 2017 has been equally fraught on the James front, although we are making progress. The last couple of weeks have brought a whirlwind of unanticipated developments and emotions. We knew we were in for a doozy as we entered into this current intense treatment phase, but even with our expectations managed, it was not quite the holiday we anticipated.
The Friday before Christmas was a big dose of additional chemotherapy, a drug he had not gotten since Day 4 post-diagnosis way back in August while at Boston Children's. For this round I had to take him inpatient to UCSF Benioff Children's for the infusion, as opposed to our normal outpatient clinic there, and he fought it hard. Three nurses could not hold him steady enough for the needle insertion, and eventually I had to lie under him and pin his arms and legs down from underneath so that they could get the needle into his chest to deliver the medicine over a painstakingly slow 3-hour drip. The word trauma came to mind several times in the midst of that, as it has many times over the past few months. Fighting back my own tears once it was finally in and everyone had calmed down, the head nurse said to me, "Okay, so ... has anyone told you this yet? No? Well, this is a drug that during the second dose or thereafter can cause an allergic reaction in some patients, leading to serious anaphylactic shock. So just make sure he keeps breathing and call us if there are any problems." And she left the room. She was kind but efficient, and clearly busy; I wanted to yell after her "and if my own heart stops? what then?"
But he was fine, my panic subsided, we got out of there after six hours and went home to try and ave a relatively normal Christmas despite Charlie having to work the holiday weekend. I had done ample present preparation, and Charlie's parents arrived that afternoon, and we were all feeling festive. James seemed great the next day on Christmas eve, Charlie was planning on going to his own hospital to round from 5-7am on Christmas morning and then come home to open a few presents with the kids before heading back to his own patients, and we had a gourmet Christmas dinner planned and prepped. I felt proud to have every present wrapped and under the tree by approximately 11:47pm and fell into bed, anticipating that we would have a great Christmas despite the crazy reality we are in this holiday season.
At 1am, perhaps anticipating the reindeer's patter, James came into our room - not unusual these days in and of itself. But he couldn't stop vomiting every 20 minutes or so. No fever, so we thought it was just some standard chemo-induced nausea that would hopefully run its course, but he couldn't keep any anti-nausea meds down, and the next morning our bed, bathroom, clothes, and towels were a wreck, we were all exhausted from not having slept a wink, and he was listless, weak, and continuing to vomit frequently. We called the pediatric oncologist resident and she said to bring him in right away. Grace was devastated, and James couldn't even muster any 5-year-old wonder at the marvel of wrapped splendor underneath the Christmas tree, but we navigated the day with the adults taking shifts bedside with James and trying to maintain some normalcy and excitement for Grace back at home. They ruled out pancreatitis but were concerned about other complications so kept us overnight: Christmas dinner morphed into cold Burmese takeout in the hospital room, and as I prepared to spend the night there with James, I promptly vomited as well. The next few days all of us succumbed to whatever ghastly virus had decided to lay us even flatter than we already were. Charlie called in sick mid-week for the first time in his career. Suffice it to say we limped to the finish line of 2016.
For me, it has been yet another crash course into managing the swing of my emotions in response to the chaos, stress and unpredictability of our situation right now. I've never been particularly adept at calming myself when under stress, never able to meditate like many of my Californian friends or practice that elusive and alluring concept of "mindfulness". I know it would serve me well if I could. My intense fear of losing James. My guilt at shortchanging Grace the maternal attention she deserves. My relentless self-doubt as to being capable of handling this all, my shame that I don't want this to be what my life is, my panic when James spikes a dreaded fever, my rising anger when he absolutely refuses to take his meds no matter how many strategies we try, landing us in the hospital twice a day over the past 2 weeks with a feeling of shame and embarrassment that we can't get our strong willed 5-year-old to cooperate. My shock at the fact that he would rather have yet another terrifying needle plunged into him than yield to the oral meds he is supposed to take every day at the moment. My empathy, and my ultimate grief at finally understanding his need to assert the one last bit of control he has over his body when so many hostile things have been done to it at such a tender age. My fierce love and desire to protect him, to protect all of us from the hostilities of the world.
The Rumi poem above is the closest I have come to being able to understand what it means to keep perspective during times of extreme stress, exhaustion, turmoil. To acknowledge to oneself that joy will come again, to train your mind to treat each emotion as it comes as sort of anthropologist of the self, of the human condition; getting curious about the emotion as it comes through you, welcoming the experience of it as a human reaction, knowing that it too shall pass. I remember talking a former roommate through a college-age heartbreak, and agreeing that despite her anguish, experiencing the full range of human emotion was something we both valued, even courted. I am still not someone of faith per se (sorry Claster! there's still time!) and consider myself an agnostic, despite finding myself praying to some sort of entity these days, some sort of collective wisdom and power out there in the dark. But now more than ever I am building more courage in my convictions. I've decided I'm something I can only call a "radical humanist" of sorts: I believe more than anything in the power of human connection, in emotional depth, in empathy, in courage and fear and triumph and vulnerability. In being real, and fallible, and in helping people connect to who they are and who they want to be - with themselves and with one another.
That said, while I welcome the emotional realm of being human, I also don't want to dwell too much on sadness, on defeatism, on the despair I feel at times these days. Lack of sleep and overall fatigue can lead me to some pretty dark places at the moment, including overall despair at the thought that I may never be able to take my son's health for granted again. And of course, there is the self-blame - not rational, but still tenacious. I admitted to my friend Becca the other night that a part of me, however irrational, blames myself for James' diagnosis. That if I were a more positive person, less anxious, more grounded, calmer, more confident, this would not have come to pass. Even if I am not religious, I am a big believer in self-fulfilling prophecy, and think there is merit to the law of attraction in that you often bring about what you believe, manifest what you choose to dwell on whether positive or negative. And I worried aloud that my negativity had led me and my family to this awful experience. She quickly and humorously jerked me back to my right mind: "Honey, I hate to break it to you, but you're just not that powerful." Touche. She is right, and I was relieved at her stern and loving reminder. That said, I still do believe in self-fulfilling prophecy. What would be true for us now, or simply for me in my own life, if I had an unyielding faith in the justice of the world? In my capacity to navigate it with skill and aplomb? I want my children to feel confidence, agency, optimism as they face each day - it will come back to them in spades.
Grace and I went to a friend's house for dinner the other night, and their kids had been given a "Swagtron" for Christmas - sort of a Segue meets a hoverboard, with a gyroscope that helps you move forward or backward at the slightest lean or directed attention. The children would climb on and go slowly careening across the floor, backwards and forwards in smooth, purposeful motions. As a former gymnast, diver, and ever a faithful Libra very confident in my physical balance, I hopped on to try it myself. The thing went crazy. With nary a directive from me, it started bucking and thrashing and spinning me in circles - I kid you not. If you have read Harry Potter and you remember the hex that Professor Snape or Quirrell or whatever villain of the day put on Harry's broomstick during a key Quidditch match - this was frighteningly similar. And it was clearly picking up on all of my underlying anxiety and overall cluelessness about what the hell kind of direction I am going in at the moment. We were all laughing hysterically as I finally leapt off the thing and curled up in fetal position next to the couch to recover. If I am the captain of my ship, I sure am steering myself toward - and through - some pretty rough waters where maybe I could chart a calmer course. I think the swagtron was more effective than any personality assessment I could ever administer! I'm giving it to all my clients so I can collect some extra data on their own hidden neuroses.
That said, I am growing, continuing to find strength, seeking out the calm before, during and after the storms we are weathering now. I am yielding to the imperfect. The notion of the "guest house" has several meanings for me right now - we have had several family and friends lovingly come and stay to help with James, more as extreme helpers than guests for sure. But there is nothing quite like having even loved ones outside of your most intimate family circle bear witness to your own family system at the height of its dysfunction. My poor half-sister seeing Charlie and me struggle to get James to swallow his pills: good old fashioned parental reasoning evolving into coaxing, bribery, threats, begging, trickery, desperation, and finally sniping at each other out of sheer exhaustion, frustration and panic: what if he misses this oral dose of chemo? What if we can't force it into him? We waterboarded our son with crushed up chemo and orange juice as he was sleeping and he still fought it hard, waking up screaming and furious with more than half the dose covering his bed, a place we have always wanted him to associate with safety and comfort. It is quite an exercise in humility, but here we are. I've always cared the most about being authentic - and those who are bearing witness to this are getting a whopping dose of real.
So... a radical humanist. I will say that in addition to claiming this as a philosophy, a practice, and belief even more fully now, I have also committed to motherhood in a way that I never quite knew before. I loved my children before this happened - now I feel called forth as a mother on a whole new level. It is hard as hell, and it is a privilege.
My son. You turn 6 tomorrow. You have been robbed of half of your carefree 5-year-old existence, unable to mark key rites of passage as of yet that propel us all forward in life. And yet ... you have endured more than almost any adult I know. I watch you become more of a man, more mature, more grounded every day. You said sternly to me today as I was laying down the law about some rule, telling you the "clock would reset" to delay some privilege if you didn't come now: "Mommy, you can't just reset the clock. You can't change time. You can't ask the wind to not come if it is windy, you can't tell the sky not to rain. You just have to let it come." A wise comment that brought me to my knees as I then tickled you into happy submission. I have watched you grow far, far beyond your years in a way that will serve you for a lifetime to come.
I consider my own aging as well these days. I feel lifetimes older, exhausted from this experience, but also at peace. The crows feet have morphed into grooves, deeper wrinkles - but rather than lamenting my fleeting youth, I am able to see them as lines of greater depth and character. Seasoning, as my mother would say, which does not have to be at odds with beauty. The channels of a tumbling river - I would rather have deeper water, coursing through channels, a rushing flow of water with varied speeds and pools and terrain, versus a shallow, predictable moving stream.
And so ...the waters run. We age. We grow. We laugh, and love. We live on.
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