You probably haven’t spent much time imagining what babies are like on steroids. I had never thought about it at all until Zephyr’s tumor relapsed for the first time in May of last year.
After laser treatment failed to make a sufficient impact, Zephyr began something called intra-arterial chemotherapy (IAC) in June of last year. In this procedure, Zephyr is put under anesthesia and a catheter is inserted in his femoral artery (by the groin), threaded up his body and past his heart and into his head. Finally an extra tiny catheter is positioned inside his eye whereby the chemo is delivered directly to his retina. This whole “chemosurgery” takes anywhere between 2-4 hours depending on complications.
After every IAC he has to take steroids for five days to control any inflammation that might negatively impact blood flow in his eye and head. Zephyr has had IAC now seven times, with his eighth scheduled for Wednesday (and the ninth in July). This means that for most of the coming week we will be re-immersed in the challenging but interesting experience of caring for a very young person on strong steroids.
Journal entry from June 28th, 2022 - Zephyr is 9 months old
Over the five-day course of steroids, I don't think he smiled at us once. He didn't seem interested in anything; even his toys frustrated him. He didn't make much eye contact with us, and when he did there was this glassiness to it. Trying to interact with him was like talking underwater.
But sometimes he would look me squarely in the eyes and go rigid, his hands in little fists as he shook with the intensity of what he was feeling. He’d gesture that he was hungry, and we would feed and feed him until he was stuffed, bloated, and he still would scream for more, vibrating with this kind of electric frustration.
It’s been like part of him is missing. And the part of him that is there is skeptical, grumpy, frustrated, and very very very hungry.
It has now been more than 24 hours since he had his last dose, and I am finally seeing glimmers of...Zephyr. He ALMOST smiled. He is starting to make more eye contact.
Zephyr is starting to be more himself.
What interests me here is the language and the assumption within it that there is behavior that is Zephyr ‘himself’ and other behavior that is not. There seems to be this supposition in the English language that there is some kind of steady self - and that when one is behaving differently than that, then one is no longer actually that self but something else.
But our application of this idea is inconsistent. When people in extreme circumstances behave heroically we assume that heroism is part of who they really are, while we might make excuses for others who behave poorly under duress. And then there are the times we learn someone has done or said something that we don’t like, and without knowing any context at all we assume that on some level they are not as much of a “good person” after all.
So do things like drugs (prescription or otherwise) and alcohol change us, make us "not ourselves?” What about anti-depressants? What about hunger or fatigue? Where do we draw the line between who we “really are” and what we can discount as an aberration? What defines us, reflects the truth of us, and what doesn’t?
Is Zephyr on steroids still Zephyr?
And what behavior are we and are we not responsible for?
When Zephyr is on steroids I feel the constant need to explain it to people around us so they understand why he might be screaming or aggressive. If I can say he is “not himself” then it’s not MY fault as a parent if he is loud or angry or misbehaving. That’s not really HIM. It’s just the drugs.
Babies change constantly. Hour to hour they are in flux - sometimes hungry and annoyed, sometimes gassy and uncomfortable, sometimes bursting with energy and laughter, sometimes tired and cranky. Meanwhile, their bodies and brains are going through so many long-term changes - teething, growth spurts, developmental leaps.
And yet we still feel the need to define them, explain them, make excuses for them.
When my first son Rio was five or six months old, I took him to California to meet some of my relatives. My amazing Argentine aunt strode over to where I sat with my son and she said hello to him. He turned away, unsmiling. I began to explain how he was tired, how he still had jet lag, how normally he is more smiley, etc, and my aunt interrupted me saying, “Darling, he is a baby. You don’t need to explain.”
It was such a relief at that moment to stop trying to define or prove what he was “really like.” To let a baby just be a baby, ever in flux.
After every IAC, Zephyr takes dexamethasone, a synthetic corticosteroid to suppress inflammation. However ‘dex’ can also alter cortisol levels and affect the functionality of neurotransmitters (chemicals involved in communication between brain cells) like serotonin, dopamine, and noradrenaline, thus potentially affecting emotions, reactivity, and stress levels.
In the early days of taking steroids, the difference between “normal Zephyr” and “steroid Zephyr” was extreme. I’d really only ever seen him sweet, curious and loving - and it was quite a shock to see him exhibiting completely different emotions. I felt like the drugs temporarily took my baby away, and replaced him with a changeling.
Nowadays Zephyr’s transformation under steroids is less dramatic. He still is easily enraged, undoubtedly irritable, and unendingly hungry. However, he also laughs and smiles during his course of drugs and seems better able to learn, play and enjoy himself.
He is a year older now and far more emotionally complex; anger, jealousy, suspicion, mischievousness, sneakiness, resentment, etc, have joined his palette of emotional range and are now a regular part of what he might experience or express alongside emotions like joy, affection, curiosity, and kindness.
So I don’t know if the steroids make him “not himself” - perhaps instead they make him this limited, specific portion of himself, like filtering out most of the other colors that are usually there in the prism of who he is, so that all he can feel and we can see is the red.
So many of us are afraid of losing control - afraid of what others might see about us beyond whatever self we have been projecting. We cringe at the messy drunk. We fear the carelessness, the anger or petty meanness in us that bursts out in moments when we are hungry or tired or upset. We are afraid of who else we might be - potentially something ugly, something bad, or something cowardly.
It doesn't feel safe to admit that these moments of "not acting like ourselves” might actually be part and parcel of who we are. We all are composed of so many shades of darkness and light, so many nuances, so many possibilities. And in certain extreme circumstances probably ALL of us would behave in ways that would make us ashamed or disgusted or afraid of ourselves, and afraid of how others would see or understand us.
Yet each of us has a different weak spot, a different trigger, and a different moment where we might surprise everyone with our capacity for beauty or ugliness. The specific frailties and strengths, the capacity for both bad and good, these are what make us so interesting, make us unique, and make us human.
It seems obvious that we should try to be understanding about how a baby behaves. But we are much less likely to extend that understanding to an older child, and even less so to an adult. When a child misbehaves, we often assume it’s due to “bad parenting,” not the more likely culprit, that the child is hungry or tired. When an adult does something rude, the first thing many of us think is “What a jerk!” rather than “Wow that person must be having a really bad day!”
We regularly judge people for one bad moment, deciding it is representative of who they "really" are - a person they perhaps have been hiding under the facade of someone nicer or wiser, or less selfish or biased.
How different things would feel if there were more openness to making mistakes and then learning from them, and to the idea that we all, under certain pressures or in certain circumstances, behave in ways that negate our understanding of ourselves and go against the people we want to be.
I wish there was more acceptance collectively of how complicated we all truly are. It doesn't mean there is no true self - but that self is so fluid, so complex that we can spend our whole life getting to know it and still be surprised. I wish it were ok to be many things, including angry, sad, and occasionally mean, selfish, arrogant, petty, or jealous. I wish we felt better about the moments when we find ourselves in those dark places, knowing that they are in everyone.
And this would not negate our responsibility for our damaging words or actions, or our recognition that we must try to do and be better. But if we weren't so afraid of our potential for mistakes, and what it might mean about us, it wouldn't hold so much power over us. And we'd feel more freedom to find ways to become the person we want to be, rather than spending our lives afraid that the person we ‘truly’ are is not good enough.
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Astonishingly beautiful and perceptive as always, thank you for this, Pacifica. 💛
He must feel strange to himself when he is all doped up. I admire your understanding of him and his cancer. You are looking out for him. Who is looking out for you? I hope you have a huge circle of support. This precious child is doing the best he can, too. I continue to pray for all of you. It sounds so shallow to keep saying it. Some think prayer is stupid and useless. If so, that's okay. I'm not judging. Prayer is the only thing I have to offer, and I believe that God hears all prayers. I'm sending love to all of you, (also largely useless, but well-meant). I will gladly share on FB.