over the weekend, my husband and i somehow got onto the topic of the shitshow that was our life from march twenty twenty til now. we don’t talk about the virus much. he knows that it can be triggering for me and it usually only comes up every once in a while. we also don’t talk about those four weeks because they were dark. very dark. for both of us. one of us was dying and the other one couldn’t save them. we lived separately for seven weeks. we texted and facetimed but it was a dark time. we didn’t talk about it then and we don’t often talk about it now. sometimes, i think it’s because we are too afraid of how dark it really was. but it came up this past weekend. and we got to the dark parts. where the narrative shifts from having an infectious disease to dying from an infectious disease. and i said, ‘that was a dark time. in that hospital bed. dying. death is a feeling that i will never be able to describe. it is a pain and suffering so great, there are no words to fit it.’ and it’s true. it’s a feeling i have experienced twice. just months apart. march twenty third twenty twenty and again in early december twenty twenty. from different diseases. from different treatments. but the pain and the feeling is unforgettable. and sometimes, my brain will flashback to those moments. doubled over after the fifth round of chemo. or sobbing into a wet hospital gown. fevers of one hundred and three. the code blue across the hall. the absolute gut wrenching pain. it’s hard to feel safe. i mean, i felt that way when i entered recovery last april and sat alone in my room for two weeks after. and i felt that way when the world began to shutter and new york was placing corpses in refrigerated trucks. i felt that way when i sat six feet apart from other family members at my grandmother’s funeral service last july. and the fear carried over into the diagnosis i received just three hundred and thirty six days ago. on an august afternoon. but to be fair, i knew it was coming. my life and my story and my timeline are never not eventful. but in general and even right here, in this space, in survivorship, it’s really hard to feel safe. and that’s trauma for you. it lives deep in my bones and has settled in the spaces between my brain and my heart. it’s coated the layers of my body and established a home, despite my valiant efforts to remove it. i met my trauma therapist for the first time on june twenty ninth twenty twenty. virtually, of course. i basically word vomited my story in one large breath. it just came tumbling out. near death experience, infectious disease, dying in a hospital bed, alone, isolation, the unknowns. and we spent a good chunk of time after that first day, unpacking what lives inside of me. but here we are, one year later, still unpacking it. because the body keeps score. it keeps a tally. and for the record, the body keeps score is a very well known and very well written book about the body and trauma. but it’s true, the body remembers. and my body remembers all the time. making it hard to feel safe. because once i came home from eight days on my deathbed in a hospital that was still learning about the virus, i lived in fear. because it’s hard to feel safe in a body after facing death. after fighting for days on end. after feeling a sense of betrayal. after saying goodbye to the person you once were and accepting the person you are left with. it’s hard to feel safe. there. i said it. that’s the hard part of remission; of making it here, alive. and it’s hard to be here. feeling tugged between gratitude and fear.
since february second, the day i joined the survivors on this side of the battle, i have had two recurrence scares. not many people know that. in fact, the first one happened on june first and the second one last thursday. the first one, i told no one. i cried alone in my car for forty five minutes and again in the shower the next day. i masked it by blaming my fatigue and sadness on my most recent treatment. but i ended up cracking on the phone with my care plan nurse. she calls once a week to check on me. we usually chat for less than five minutes. i kept her on the phone for twenty four minutes. i sobbed violently into speaker phone, barely audible as i mumbled about my migraines and a potential brain scan. the idea of having mets [that is a laments term for metastatic cancer] at the four month mark wasn’t unheard of and my six day migraine wasn’t budging and the world was feeling dull and i cracked. so i started a new medication and it worked. and the recurrence scare slid away. safe. right? that’s what they say when you slide into home base. until it resurfaces. the fear. the panic. that the one thing that tried to kill you made its way back. and so when a large lump appeared last week, my oncology team’s response was that it needed to be looked at immediately. and so i began to rearrange my schedule. to drive to the clinic. to await the same news i had received last august. while sitting crisscross applesauce on my bed. a doctor called and just said ‘i am so sorry’. and while i sat on that stupid papered table waiting for my oncology nurse, it felt the same. unsafe. unsure. and that’s a big deal. to be in total solitude when pathology comes back after battling cancer for what feels like an eternity. to hear the word remission. to know the end is approaching. to be flung back into that place. and so when it turns out that my recurrence scare is just my third mrsa infection, we have a good laugh at the clinic. but safe isn’t how i suddenly feel. and it’s easy for the outside world to say ‘control what you can control’. worrying about recurrence is just like worrying about anything else. yes, you’re right. but it’s hard to feel unsafe. in a body that is tired of fighting. safety. something i have been longing for after being sick for months and months. something i have wanted to wrap around me and hold me close after months of feeling unsafe. safety. and sometimes people ask me why i can’t focus or why i haven’t picked up a new book or started a new show. it’s not because i don’t want to and it’s not because all i do is think about cancer. it’s because my brain is currently in fight mode. a part of the trauma cycle. where you are in fight, flight or freeze. that’s what your body does when it senses danger. it picks one of those and moves your entire central nervous system into that mode. my body has been in fight mode since early march of last year. it’s a lot like after those blissful moments after surviving the virus, when suddenly i began to believe that i would be reinfected and die at any moment. and no one could tell me that wasn’t going to happen. and sometimes all i want in this space is to feel safe. to be held away from the harshness of the world outside. to be held in such a way that it doesn’t feel so scary anymore. safe. safe in the world; safe in this body; safe on this side of death. safe in survivorship.
one of things that’s hard about being here is how everyone else pictures me being here. the expectation or assumption that the past is the past and what lies ahead is everything i have dreamed of. but in reality, the steps forward are slow and often heavy. cancer may lay in the place i buried it but i carry what it gave me everyday. it graced me with new symptoms and side effects. new brain patterns and energy levels. new scars and body image issues. new hair growth and different skin textures. bumps and bruises and swollen skin. memories and moments. it’s left me turning each corner, scared of what lies ahead. it’s a day at a time kinda vibe over here. knowing that cancer could strike at any moment. knowing it could come back quietly like it did the first time. or louder than before. safety. that’s what’s missing from survivorship. feeling like it’ll be okay to let go and you won’t float away. it is so hard to feel safe. it is so hard to feel safe. it is so hard to feel safe.
but i am working hard to not give my power to cancer. and to live for the right now. to find safety in myself and the home i am building for myself here in remission. to find safety in this side of treatment. to lean into myself for safe landings. to carry myself in hard moments. to ground myself when the world feels big and harsh and scary. to remind myself that there lies a warrior inside; even on the days when cancer feels like it’s winning. even on the scariest days. even when it feels dark; like the darkest days of chemotherapy. even when it doesn’t feel safe.
i can be my own safe place. i can be safe. i have earned safety in this space ; in this body ; on this side of cancer.