This essay was written in 2007, 12 years after my diagnosis with childhood leukemia. I was thirteen. My treatment lasted over 2 years, and when I finally finished, I had already begun to suffer from bone death in multiple joints, caused by the chemotherapy that saved my life. Having cancer as a teen was deeply life altering, and changed not only my life path, but the very way my brain functioned.
It is known now that the chemotherapy that children receive causes long term brain damage. One of the ways that this manifests is through issues with executive functioning. Another example would be memory issues, often referred to as “chemo brain.” For many years, no one took the term “chemo brain” seriously. It was assumed to be an “out” or an easy excuse for someone who had been through a lot. Research has now shown definitively that chemo can damage someone’s brain to the point that it is unable to fully recover. This is a not uncommon side effect for children, as they receive more chemotherapy, at higher concentrations, for longer periods of time, than adults do - receive it during a time when their brain is growing and therefore, more sensitive to chemical toxicity.
This essay explores memory loss, in the context of healing from complex medical trauma.
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I died when I was thirteen. There was no funeral, no formal grieving time. There were no eulogies written for the little girl with long, brown hair and gap-toothed smile. No one reminisced about how I had been a star on my softball team. No one told accounts of how I had been involved in the choir and school play the previous year. My neighbors didn’t tell stories of the girl who went everywhere on roller-skates, who could often be found cherry tree in her front yard, who never failed to greet them with a huge smile and incessant chatter. No one has ever cried over a bouquet of flowers and an engraving of my name on a piece of granite. I just ceased to exist.
The hard thing about dying is the mourners one leaves behind, the people who hold on tightly to moments of one’s existence so that they don’t lose the deceased permanently. They erect shines in the form of photos and graves to invoke memories, to encourage those thin strands of memory not to be whisked out of their lives for good. They stand, held sacredly by their community in their pain and try to let go without completely losing their loved one. It is a tricky business, this grieving. It requires one to walk a tightrope of attachment, balancing on the edge of what is “healthy” and “unhealthy.” It requires those who have been left behind to rise from the ashes of life as they knew it and be reborn into a life without someone they knew and loved. They must make room for ghosts, for grief, for emptiness. The gravestones, the shrines, and the pictures honor that emptiness, that ever-present grief.
There are no ceremonies one can participate in to mourn ones own death. I died when I was thirteen but left no body to be buried and no casket to close. I just shriveled up, curled into a ball and stopped living. I continued to walk through everyday, I fooled those around me into believing that I was still present. There was no memorial for the girl I once was, for no one even realized I was gone.
Years after my death, I found myself searching for answers. I learned that when one experiences cancer at a young age, they must mourn the person they were meant to be. They must let their dreams die and be reborn into this new reality.
With my death, I lost my memory. Perhaps it was misplaced somewhere between a procedure room and an IV bag; perhaps it doesn’t matter where I lost it. I have heard it said that if one does not learn from the past, one is doomed to repeat it. It is no secret that we build our lives on understandings of yesterday and dreams of tomorrow. It builds a foundation for today. But what kind of foundation do you stand on if yesterday has been wiped from your memory and tomorrow’s dreams are no longer possible?
With the death of the person I was and the absence of memories that would help me to recreate myself in a new form, I was haunted by voices long since dead that I couldn’t let go of. I found myself perched on this tightrope of attachment with no idea of how to find my balance. I was reborn into a body that held memories that I was reeling from but couldn’t access. In order to find some sense of solid footing, I sought out others to help me recreate yesterday. I looked to those who were there to give the ghost I lived with, a voice; searching for Self in stories of the girl I once was.
The First Spinal Tap
“Breathe, honey. Come on now, Erin, take a deep breath.”
The steady, high-pitched drone of the oxygen machine does nothing to lessen the tension in the room. It warns her of what she already knows: her daughter is in danger. The stark, white walls seem to glow in the florescent light and give an unearthly sheen to the skin curled tightly around a frame that was lively and laughing only a few days ago.
“Take a deep breath, now. Breathe.” Her voice grows an edge and her face becomes hard. Her eyes are the only sign of the acid that is churning in her stomach. She is sure that there must be an invisible rope slowly tightening itself around her ribcage, forcing her to breathe through the tight binding. The dark circles under her eyes speak of the nights that she has woken to every beep, every sigh, every new noise in this ungodly place.
Her face loosens as the drone stops and her daughter pulls air deeply into her lungs. She blinks back the tears that threaten to overwhelm her, and tightens her grip on the small hand in hers. The nurse smiles softly at her, quietly encouraging her to live through her worst nightmare.
“We’re almost done, now, Shanti.” The doctor offers this small reassurance to her as he focuses his attention on injecting a cloudy liquid into her daughter’s spine. The needle he places on the table looks like one Shanti might use on one of her cows. She shudders to think of the force required to punch through a cow’s thick hide and what that might do to the delicate skin under the thin hospital sheet. Silently, she thanks God her daughter will not remember this when she wakes up.
The oxygen machine begins its irritating drone again, and she softly squeezes her daughter’s hand. “Sweetie, you have to breathe now. Take a deep breath.” The thin form responds immediately this time, filling her chest quickly and emptying it just as rapidly. The doctor straightens up, having finished dressing the first of many wounds and the nurse begins to tidy the bed.
They warn her as they wheel the bed down the hall that her daughter will only sleep for a little while and will probably wake disoriented. It is best if she doesn’t leave the room until her daughter is more comfortable. Don’t let her sit up, either, they say, as there is a good chance the pressure in her brain will be somewhat altered and she could develop a serious migraine at the very least. “And of course,” they remind her, “if you need anything, just press the buzzer.”
The doctor with steady hands and the nurse with the soft smile leave the room just as quickly as they entered it, and Shanti collapses into a chair, her head in her hands. And in the safety of Erin’s sleep induced ignorance, she begins to cry.
The girl in the bed, the “thin form,” is me. This is a story that I’ve been told many times. Or perhaps it is one that I created, a “false memory” of sorts, fabricated out of a mélange of moments and procedures that all seem to blend into one. But this memory is engraved in my mind, one that it is not physically possible to remember. I was under amnesiac anesthetic at the time, put “under” by a drug that would wipe out a chunk of my memory. When I woke up from these procedures, it was as if they had never happened. The only thing that would confirm the experience I knew through stories was the ache in my back that suggested I had been kicked by a horse. The horse story sounds so much more romantic than the truth. In reality, a doctor had inserted a large needle between the vertebrae of my spine to test the fluid for cancer cells and inject powerful chemotherapy to kill off any cells (good and bad) that were doing their best to help my teenage body to grow.
For some reason, this is a memory I hold onto tightly. I hold it close to my heart like a guilty secret. The title I give it is First Spinal Tap. There are many more titles and heart-wrenching scenes that I have filed away in my memory – some of which I was present for and some, I am sure, I wasn’t. They carry titles like Boy with Staples in his Skull, Chemo Like Bee Stings, and M*A*S*H* Insomnia.
Perhaps I have created memories in order to make sense of the myriad of emotions that I have found myself drowning in some days when I heard the “c” word: cancer. Or perhaps it is because life is much more comfortable when one doesn’t walk around with gaps in one’s memory like holes in one’s pants. I felt vulnerable sometimes, disarmed by the absence of denim, not knowing how much of my bare legs of memory are being displayed to the world. I look for answers now to complete the picture.
Doctors would call it “dissociative amnesia.” According to one of the leading institutes that deal with trauma, the Sidran Institute, when children experience prolonged trauma, they also can experience “a complex mental process during which there is a change in a person's consciousness which disturbs the normally connected functions of identity, memory, thoughts, feelings and experiences.” In my many years dealing with doctors, I learned how to translate doctor-speak. Basically, when something is too painful, your brain blocks it out for you. It may be permanently lost. The medical articles make no mention of the pain that results from having a chunk of your life missing. No mention of what one is supposed to do when every day is built on a time that you can’t access. And no one, certainly, has ever joined me in the mourning of losing this time of my life. I should be grateful it’s gone. After all, it makes it much easier to get over.
I have never really understood how getting over something that changed everything in my life is something I should strive to do. But there is a silent suggestion that once I am officially “over it,” my life will be candy-coated and fluffy. I don’t like candy or fluffy things all that much, but I feel like I should. So I try to get there by wading through the hard stuff. The gaps.
Sometimes, when I have been most desperate to make sense of this time in my life, I dig up my old journal. My journal from that time is painfully aware of the need to sound positive and record some moments for future reference. My words are saturated with the understanding that this writing was important, that someone would read it if death won out. Without the whole truth, though, it’s nonchalant and bland:
Emily came to visit me at the hospital today. She is such a wonderful sister. I am so lucky to have her in my life … My dad warmed my bed with a hot water bottle when I got home … David came to visit me and watch TV with me today. He made me lunch. It was nice. And oh yeah, I lost all my hair.
There is no mention of how I used to close my eyes when I would walk past a mirror, so that I wouldn’t have to look at myself. No mention of the headaches. There is no detail at all. Most of the time, writing more than a page would tire me out. Still, I wish I had known then how valuable truth is. If I had known the person reading it would be me, perhaps I would have preserved it with more care.
Without my own words, I have had to rely on other’s snapshots to fill in the blanks. Sometimes, when I am lucky, some story they tell will jog a moment loose in my brain and it will fall into place, completing the scene so that there is no need for guesswork. Other times, I find myself listening avidly to the details, hoping something will inspire memories to recreate themselves in my mind’s eye. Every once in a while I am witness to a scene that propels me back to having cancer without warning. It is always a jarring experience to see myself lying in a hospital bed so many years ago.
Even now, my memory resembles a badly edited film, jumping from one scene to another, no filler dialogue, no smooth transitions. I have tried to dredge up moments to fill these blank spots, to find out what really happened. I have recreated images of rooms, of hallways and tried to conjure up characters to fill them.
I have tried desperately to find a face to put on the nurse who sat with me all night in those first days in the hospital. I know she was young. I am sure she was pretty. I have vague impressions of curly, shoulder length brown hair and a friendly smile. I don’t know what it was we talked about all night but I am sure it was brilliance inspired by morphine (on my part) and lack of sleep on hers. Perhaps it would seem trivial now. It doesn’t really matter, though, because that’s not what I remember her for. I remember her because she spoke to me like an adult. In a time of my life when my awkward teenaged body reminded everyone of just how young I really was, I faced the nightmare those adults had never considered. I floated on that path towards death, teasing it with my two-steps-forward, three-steps-back routine. And somehow, this nurse seemed to understand just how frustrating it was to be denied the courtesy of acknowledging that not only had my body changed irreversibly, but so had my understanding of my world. And so she sits in this storyboard of my memory, wedged between morphine drips and the never-ending stream of well-intentioned visitors.
When I don’t remember who came to see me while I danced with death to the music of chemotherapy, I look at the giant photo album filled with cards of people who sent me love, from those who prayed for me. Many of those people have floated in and out of my life. The ones who really matter are still here. For the day to day, when death no longer knocks at my door, they are the ones who help me piece my previous life back together, even when it hurts them to remember: my family.
David came to see me in the hospital almost everyday. He doesn’t know why anymore. He says it might have been just for something to do. I am not convinced. It seems strange to take a bus for half an hour by yourself as a kid to visit a sick cousin for fun. Sometimes, he got lucky and my sister was around to hang out with. The fact is, though, I don’t really care why he came. It’s enough that he was there. And he’s willing to create memories for me in the form of stories now to help me fill in the blanks.
The Red Trike
They could see through the window into her room from the rooftop. Perhaps they should have been spending more time with her, but she was always sleeping. And when she wasn’t, she would just zone out in front of the TV. It was weird to see her like that. She was completely inanimate – kind of flat. She would talk to you if you talked to her and was very nice to everyone … but it seemed like Erin had disappeared and it was just her body that was left, lying in the hospital bed. It was kind of creepy. Every once in a while David could get her to laugh and for a split second, she would seem like her old self. And then something would change and she would be gone again. It was as if she was in hiding and could only be called out for something worth seeing. There wasn’t much worth seeing in this corner room of the hospital except machines that beeped and blinked red lights, a sliver of the isolation hallway and a small portion of the rooftop garden.
Today, when David and Emily had arrived at the hospital, they had found Erin hooked up to an IV and dreaming. Knowing that it could be a while before she woke up again, they headed out to the rooftop to play. They passed the game room and hesitated for only a second before turning left to get outside.
Yesterday they had spent a couple of hours in the game room, poking through the boxes of toys and crafts, trying to find something to occupy their time. While they were in there, they could watch the people coming and going. Doctors and nurses were the ones who seemed to spend the most time traveling from one ward to another. The hospital staff wasn’t very interesting, though. They were always frowning and seemed to be in a constant rush. At one point during the afternoon, David and Emily had looked through the clown and smiling-sun paintings on the glass doors to see a frazzled looking woman pushing a wheelchair off the elevator. The girl in the wheelchair must have only been about five years old and was small enough to have been swallowed by the blue seat. She was curled up and she seemed like she was crying. She had about ten (maybe twenty), long, blond hairs growing out of the sides of her skull and Emily said that it reminded her of her grandfather. As soon as the words were out of her mouth, she had looked away and walked towards the TV. She tried to quiet the voice in her head.
Erin looks like the little girl in the wheelchair and Grandpa. And she’s not old. She’s sick. That’s just as bad. Or worse. People talk in quiet voices about her. Like something is really wrong.
David felt his stomach get really tight as the mother met his eyes and he quickly joined Emily on the other side of the room. His hand on her arm jolted her out of her thoughts. Without speaking, they split up to find some sort of distractions.
David found a PlayStation, but couldn’t find any games. He even asked one of the nurses to help but they had no luck. Emily looked through the library of kid’s videos to find one for them to get lost in. So instead of beating his cousin at Mario Kart, he and Emily had watched Home Alone, stopping it only once to get dinner. That was one good thing about the hospital; they could eat mini pizzas from Pizza Hut any time they wanted. They thought about getting one for Erin, but they knew that she wouldn’t want it. Instead, before restarting the movie, they brought her a small bowl of ice chips and told her they would be back soon. When the movie finally finished, Erin had fallen asleep again.
Today, they explored the rooftop. David found some of those bouncy plastic animals that were attached to the ground with a thick metal spiral. He and Emily had tried to bump each other off the duck and horse for a little while before becoming bored. Not wanting to go inside, they set out to find how far around the hospital they could get. Unfortunately, they didn’t get very far before they hit a wall covered in tall hedges. At the end of the hedgerow, Emily saw a small spot of red and upon further investigation she proudly presented David with two tricycles. She got on the red one, gave the yellow trike to him and they took off down the length of the garden. David quickly realized his wheels were wonky as he careened towards the side of the building. Emily laughed as he scrambled to stop. Gravel spit out from under his wheels and he bounced off the wall. Startled, he sat on his seat for a second before joining Emily in laughter. When they got their breaths back, they raced each other down the length of the garden. David quickly got tired of trying to correct the steering of his tricycle and tried to convince Emily to trade with him. They stood outside Erin’s window and argued playfully for a few minutes before David noticed movement in the bed on the other side of the glass.
“Emily, Erin’s awake. And she’s watching us. I think we should go in now.” David shuffled his feet as guilt began to get the better of him. “I hope she hasn’t been awake long. Come on, let’s go. I’ll use the red trike tomorrow.”
I like to think that when I woke up to see them playing outside, I wasn’t jealous. I imagine that I was happy someone was having fun, even if that someone wasn’t me. It’s another one of those stories I tell myself, but it’s not as believable as the rest. The truth of the matter is that I probably looked out through the glass and wondered why it wasn’t me arguing over who was going to have the red trike.
When people in my family talk about when I was sick, I am often struck by the feeling that something has been forgotten. I am there in the scene of the story, usually lying on a bed or a couch in a scenario that revolves around me. They talk about their reaction to me being sick, something they experienced while I was in the hospital, the day that they came to take care of me. I lie motionless in their story, “inanimate - kind of flat”; a silent witness to the most dramatic experience of my short years. Sometimes hearing these stories has gotten me so upset that I have stood on the periphery of their vision, screaming silently, trying to give this lifeless form a voice. There is something unsettling about not being able to speak in defense of your ghosts that live inside others’ memories. Thankfully, though, every once in a while, someone tells a story that carries an echo of the voice I remember.
Putting My Foot Down
She picks up the phone, dials nine and then the number. She sits slightly hunched over, the phone pressed tightly against her ear. She rubs her fingernails with one hand, over and over again, as if she is smoothing them. Her brow wrinkles and she gnaws on her lower lip. The ringing stops as the line picks up and a familiar voice answers.
“Mom? I’m … I’m in the hospital.” Her voice cracks and she struggles to form the words she knows she needs to say, “Mom? … It’s Erin … It’s … she’s sick …” she takes a deep breath as the pain threatens to engulf her, “She’s … she’s got leukemia.” Tears stream down her face and her body folds in on itself. And as she sobs into the phone, she looks like a small child. She nods into the phone, unable to speak. She manages to choke out the words, “I love you, too” and hangs up the phone.
She tries to regain her composure, taking deep breaths and quickly rubs her face with her hands. She looks up to see Erin awake and watching her. Erin lies on her side, her long hair strewn over the pillow. Shanti briefly wonders how long it will be before her daughter is bald. They say that kids lose their hair within a couple of days of the first chemo treatment, which would be sometime next week. She thinks about the fact that most people say losing their hair is the worst part of having cancer and wonders how it could even compare to the procedures they have to endure. Inside her head, the desperate plea seems to ricochet off the walls of her skull: let it be me, please let me be sick, let it be me.
Erin’s hands reach out past the bars of the hospital bed. She is careful not to tangle the IV wires as she grasps for Shanti’s hand.
“Mom, you can’t do this. You can’t cry in my room. I can’t see people crying. It means that there is something really wrong, and I can’t think about that. If you are going to make phone calls, you have to do it somewhere else.”
Shanti nods, tears welling up in her eyes, “You’re right. I’m sorry. Of course you’re right.” She stands, kisses Erin on her forehead and thanks Erin for the reminder and assures her, “I’ll be right back.” She just barely manages to leave the room before dissolving into tears once more.
I wonder, now, how far advanced I was at that moment. How much longer did I have before I completely left that body? I wonder why it is that my heart didn’t stop beating immediately when I ceased to exist. By all accounts, my body should have started to degenerate right then and there.
By some miracle, though, none of my limbs seized up and my lungs kept pushing oxygen into my cells. My body woke up every day and went through the motions of living. I watched all of it happen with a sick fascination, wondering when the people who were interacting with my body would notice my absence.
I waited. And as I waited, the fascination turned to despair. Everyone around me walked through life like nothing had changed. My sister still left hearts by my bed; my dad still waited in the carport to half carry me into the house; my mom still sat beside me in the hospital, making what would become a beautiful hook rug and my gift for finishing chemotherapy. I couldn’t help but wonder how these people who loved me so much didn’t notice that I was gone.
There was no eulogy, no funeral, no gravestone. Instead, we celebrated the end of my chemotherapy regimen halfway through my fifteenth year.
I don’t know when I began living again, what moment in time I no longer watched my body move from a distance.
The story I tell myself is that it happened one morning. Perhaps it was early morning, before the mist had begun to lift itself from the fields. I am sure there would have been birds chirping close to my window and a rooster already making a racket. It would have been on an average, every day, magical morning that I became three dimensional and animated once again. Perhaps, I woke up and could feel the beat of my heart from the inside of my chest. That would have been the day that I began to finally live into my own body.
That’s the story I tell myself anyway.
The truth, I am sure, is that I came back to life slowly. My body eased me into it, helping me to remember how to breathe again, how to feel again. It felt like returning to the room that was shared with a lover after her funeral. The same and completely changed.
I kept the closet of clothes untouched until I could no longer deny the girl I had been was not coming back. I slept on the same side of the bed out of habit until I woke up one morning sprawled out in the middle of it. I took up space angrily in a room that should have been hers, in a body that did not belong to me. I learned to move again in a renovated body, deformed by an architect’s careless planning. And like any room one spends years in, I learned how to navigate this one in the darkness of night.
It took a long time for my body to ease me into this space that I shared uneasily with a ghost. I kept a shrine for her, set in the corner, for many years. I honoured the girl who once was, who would never return. I grieved for that girl’s heart, for her innocence, for her body. Grief, I learned, is not something one “gets over.”
There were nights, moonless and black, that disoriented me as I tripped over gritty memories, sending me stumbling into hard surfaces. On those nights, I would fight the urge to kick the ground, hammer my fists and scream at the sky for the unfairness of it all. More often than not, I would simply let my tears bathe the new wounds and hope that soon, the pain would recede.
And mostly, it did.
And it still does.