I had an appointment with my neurologist scheduled for 8:30am, and a second appointment scheduled with my nephrologist for 2:30pm. Since both were in Manhattan, I thought I would make the most of the gap by visiting my colleagues for the first time since the brain metastases had been discovered. I was missing my friends, and had been longing to reconnect with the purpose and camaraderie that work brings. It was invigorating to step inside the building again and see everyone. I gave upbeat updates, and we laughed and smiled about the challenges I was facing and the various things at work that hadn’t changed in the year I had been gone. They told me that I looked well, and I joked about the medically diagnosed “fat face” that came with my steroids.
And then, I was lying on the carpet. I didn’t know how I’d got there, but my boss told me I had just had a seizure and they had called an ambulance. Instead of having lunch with me, two of my colleagues accompanied me to the hospital. It was my first full seizure, and my response cycled through incredulity and disappointment. I had felt well, even energized, in the moments before I ended up on the floor. Once again, my body had reminded me that I could not anticipate what side effect or symptom would appear next.
The last month of my life has not been a time for planning or building. I have been sick – sick enough to go into urgent care once a week four weeks in a row. Before the seizure, the doctors had sent me in for fevers; for an episode when I couldn’t form sentences; for sharply deteriorating kidneys.
The hospital visits have not, by and large, provided answers about what is happening in my body. Instead, I am accumulating inconclusive tests, taking increased drugs, and waiting to see if we can recommence treatment. It is not just my body that is acting unpredictability. The tumors in my brain are as well – the latest MRI showed that seven had shrunk, but three had enlarged. So far, the doctors have no explanation for these anomalous three. Instead we are waiting for still more tests that may (or may not) provide some kind of understanding.
The result is a sense uncertainty that pervades not just the next few months of my life, but each hour of the day. I do not know what side effects might arise, or when they will come. I try to wrest control back by understanding what is happening in my body and why the doctors are making each of their decisions. But my neurologist recently suggested I was on my way to becoming a “professional patient”. I recoiled: I do not want my identity, my intellect, to be subsumed by this disease. I need a sense that I still occupy a space around the cancer. I want to remain a whole person.
There are other forces at work putting pressure on the edges of my identity. I feel it when people reach out just to ask how I am, or to send me notes or gifts unrelated to the kind of person that I am. They are, I know, acting from a place of love. But when my interactions with people are limited to conversations about side effects or the most recent scan results, I feel myself being obscured by the illness.
The pressure comes from the diagnosis itself: there is cancer in my brain. My mind is central to my idea of self in a way that my lungs, my kidneys, my bladder, are not. I fear changes to my personality, to my ability to comprehend the world, to my capacity to communicate with the people I love. I feel most alive when I am conversing, drawing connections, exploring insights. I fear losing such connections more than I fear death itself.
Pressure comes too from the experience of uncertainty, and the way it closes up my sense of being in time. There is much wisdom and peace to be gained from being present in the moment, rather than dwelling on an irretrievable past or planning for an unknowable future. However, some of the freedom and peace that comes from being present is the knowledge we are making a choice about where we place our attention. Right now, my world feels like it has been shrink-wrapped into this moment. The past is not a comfortable place for me to dwell, overflowing as it is with freedom and potential that I now find so circumscribed. The future is even more inaccessible. The plans I make are almost invariably cancelled. A weekend away from the city turned into a weekend in hospital. A planned Sunday excursion with Matt turned into a day at home, nursing post seizure fatigue. Even my attempt to have lunch with my colleagues turned into a trip to hospital. I wake up each day with just one day ahead of me.
Where do our identities live when our worlds shrink and shift so dramatically? What does “identity” mean when we are daily faced with its impermanence? How do I live a full life when I feel so close to losing the “I” itself?
We live most of our lives with the feeling that our identities are continuous – even though every interaction, every experience, has the power to shift and remake us. I experienced this in a dramatic form when I fell in love with Matt, and left behind almost all the external aspects of my identity in order to be with him. Being in New York as an unemployed new wife with no network of my own, I could not maintain the fiction that there was something immutable about who I was. Instead, I found that I could only find a sense of self by being deliberate about how I used each day. There was no essential “me” driving my behavior, only a series of decisions about how I would spend the time I had (as Annie Dillard writes, “How we spend our days is, of course, how we spend our lives.”)
The fragment of time we have now is also the whole of us, although we obsessively recall our past selves and plan ambitiously for the “us” that will fulfill our dreams tomorrow.
Now, I am again seeking to find identity by being deliberate in how I live in these fragments. I revel in the morning moment when I wake up next to Matt. I savor the times when I have enough concentration to read. I indulge my rebellious side by failing to respond to the bare “how are you?” messages that neither uplift nor inspire me. I delight in the messages I get from my family and friends with silly gifs or photos from their gardens or the latest updates on their lives. Connection and a sense of self comes with spending time with those people who see me as a whole, not just a cancer patient.
Living with the immediate sense of my identity as fluid means spending time repeatedly with the question of what matters. It is not an unfamiliar process, but one I have experienced at both profound and mundane moments in my life. I remember the dislocation I felt after graduating from high school and realizing that I could no longer rely on external approval for my own sense of worth. My first experience of living away from home compelled me to care for my surroundings (and my self) in a way that had rarely arisen in the uber-nurturing environment of my childhood home. And marrying Matt, with all the changes that came with that decision, stripped my values down to the barest essentials: love, connection, ideas. Re-identifying my values doesn’t mean starting from scratch every day, or remaking myself without reference to what has come before. The things that matter to me may, on revisiting, be unchanged in the fundamentals even as the way they manifest is being recast. Renegotiating values is not the same as abandoning them.
I still long for continuity in my identity. I want to make plans, to have insight into what is coming, to dream about a future together with Matt. I don’t want to lose my self: I want to be there for Matt and my family with all my intellect and love and resilience intact. But I can only add to my suffering by grieving a future before it is lost. I cannot know in advance what time holds for me, what I will lose and what I will gain. But I know I have time right now, to be in this world that contains such richness in every moment. That is, of course, the only thing that any of us have.
“It was as if there was a tide ebbing and flowing in and out of her house, depositing and withdrawing the flotsam of her old life. She had no alternative but to accept it, and to marvel, day after day, at what she found and lost, and then found and lost once more.”
– Elizabeth Gilbert, The Signature of All Things