Blessed is the fruit

“You will be 100% infertile.”

The words reverberated in my skull as I took the receipt from the hospital’s parking deck turnstile. My anger radiating through my knuckles as I gripped the steering wheel tighter with each passing minute. My vexation only heightened by the fact that I just paid $15 for parking.

All to be told my new treatment plan would leave me unable to conceive children on my own.

(Or without at least some third party assistance from Big Embryo or the Easter Bunny. Or however that works. My doctor apparently ran out of or didn’t have any pamphlets on the subject and my Florida Catholic high school sex education wasn’t exactly existent thorough so I’m still a bit confused.)

I’m not sure if I expected warm reassurance that everything would be ok or even a sympathetic frown as a follow up to the verbal dagger I had just received, but I was hoping for more than an indifferent: 

“Any more questions?”

Any more questions. As in, “Are we done here?” 

As if the summation of my reproductive future had been determined. The prophecy written. 

Blessed is the fruit. 

(I guess I do remember a bit from sex ed. Or that might have been from my New Testament class. It’s hard to say.) 

My anger continued to build with the more distance I put between myself and the examination table. Anger rooted in my doctor’s nonchalance in the concern for my fertility as a 25-yr-old female who has yet to even start to contemplate having a family. 

My doctor tossed me a grenade disguised as an egg. Without thinking, I extended my hand to receive the seemingly innocuous offering. 

I didn’t know the pin had already been pulled. 

I didn’t know I needed to ask if it had.

(I should specify that there was a pregnant pause before asking if there were any more questions… Apparently the only thing that was going to be pregnant in the room.)

Perhaps it was the general sense of nonchalance about the matter that left me wondering, as I sat on the examination table, if I was maybe misunderstanding what I was being told. Maybe I was the one overthinking what weight this bore. 

My doctor would surely be alarmed if this was an issue….Right? 

He was after all visibly panicked when we discovered that my initial treatment wasn’t working and the next option would require a stem cell transplant. 

That grenade wasn’t disguised however. Merely dropped into my family’s lap before he gave vague answers to our questions and exited in a huff of concern. Leaving us to sit alone, in what can only be described as a storage closet, scrambling to put the pin back into its vessel. Scrambling to fix me. 

So perhaps this promise of infertility wasn’t as big of a deal as some piece of me felt. A piece that had been allowed to remain asleep, apathetic to its existence. Until now. 

After all, I was being told my cancer was diversifying its portfolio at the expense of my life. Instead of being concerned about having a future family, I should just focus on having a future. Period. 

Plus, the indifference to my situation probably just stemmed from the fact that the messengers were a middle-aged man and an overworked nurse whose ticket on the Menopause Train - the Menopause Train: Frequently 85-degrees inside and the seats feel like sandpaper - was punched long ago. There were larger issues to tend to than my fertility. 

It took me much farther of a drive than the profiteering parking deck turnstile to understand that regardless of my medical team’s personal detachment from the matter, this very nonchalance in the threat to fertility Adolescent and Young Adult patients (AYA: 15-39 yrs old) face is one of the reasons only 46% of AYAs are informed of the impact their cancer treatments may have on their future.

46%. 

Less than half of AYA patients are told their treatment may entirely alter what it means for them to have a family. 

For those who feel having children is inconsequential, perhaps this news isn’t startling. 

For those who do not believe that being informed of potential threats to their reproductive future is a basic right, perhaps this news isn’t concerning. 

To those people, let me frame this a different way. Would you want to buy a house without knowing the total cost? Without knowing that the 1920s paint used to lacquer the walls had a high probability of causing infertility that was irreversible?

Even if you had no other option, even if you didn’t have the luxury of time to make preparations prior to moving in, prior to being exposed to the harsh chemicals, wouldn’t you at least like to know? 

I think quite often there is a weight placed on patients to be grateful. As if in facing your mortality you should come out on the other side of it thankful for getting one more day. There is an externally perceived shelf-life on your resentment and bitterness for all you might have lost, and it is much shorter than that of gratitude. 

And it is reasoning such as this that only helps to perpetuate the paltry numbers of AYA patients who are notified of the additional disruptions their cancer will cause. The part of the iceberg that rests quietly beneath the surface. The part that an unfortunate majority of doctors don’t think is worthy of warning. Or perhaps simply don’t even think to address. Blinders to the peripheral damage caused in their quest to vanquish cancer. 

I would have been on the wrong side of that 46% if I hadn’t connected with a Therapist three years prior who happened to specialize in fertility counseling.

I would not have known to ask about the risk my treatment posed to my fertility without my Therapist’s guidance. And my medical team showed no signs of filling in the blanks my ignorance created. 

Perhaps it was my lack of babysitting an egg with a classmate or the fact that family planning was not high on my priority list as a 25-yr-old female growing up in a culture dominated by money, success, and the side-hustle, but I lacked the awareness of how closely intertwined the webs of my reproductive health and cancer treatment were. And the fate of my potential children rested squarely on the shoulders of someone enlightening me. 

Oh how delicately our futures rest on someone having a good day.

A few months prior to this prognosis of infertility, I was just excited to be standing in front of the freezer eating directly from a pint of Ben & Jerry’s I thought I had already finished. 

So why would I worry about family planning when that was a subject long filed away in my brain and awaiting its number to be called?

Friday night reservations? Yes. 

When I was going to ask for the promotion I worked hard for? Absolutely. 

If I wanted children? 

I’m sorry, you cut out there. What was that? 

Yet here I was, the number being pulled long before I was ready.

As my doctor confirmed the inevitable scrambling of my ovaries,  I was more focused on the anxiety of how I should react. What is the  “normal" female response?

Do I collapse to the floor at the news? Too much for my taste. (But mostly my joints were so stiff I don’t think I would have gotten much farther than the edge of the table.)

Do I shed a single tear? It’s been done before. Namely by me. To the point where my tear ducts were now withholding. Did I want to use The Reserve Tear for this? Best we save it for the next inevitable blow. 

I dropped my head. The guttural response to bad news you learn to develop at a young age. 

Like you did after your friend in 2nd grade told you their hamster was missing. You couldn’t quite contemplate the terror Minkus the Hamster or Katherine the Friend were feeling, but you knew you should feel something. 

That was me. Dropping my head while my brain and heart tried to simultaneously grasp what this prognosis meant and how it made us feel. 

I’m still not sure we know.

The sound of the crepe paper crinkling underneath me as I shifted uncomfortably on the examination table filled the silence. A silence that felt as heavy as a quilted balloon that pressed against every surface of the room as it absorbed the last bit of air. 

I couldn’t tell if the room was spinning naturally or if that was my anxiety. No one else seemed to notice, but I chalk that up to human nature. No one wants to be the first one to break, ya know?

So there I sat, holding an egg in my hands that I was beginning to realize was more fragile than I thought. 

An egg whose shell has thinned even more in recent days, as the conversation of Reproductive Justice heads down an uncertain path.

As patients, the barrier to entry of freezing our eggs/sperm is already high. Outside of the inherent lack of conversation surrounding our options, fertility preservation is costly. Another bill to add to the growing pile.  

Contemplating the price tag on a family that you don’t know whether you want is a concept for which words fail me. They fail to express the guttural churn and inflamed heart that press against one another as you grasp for the sprout of a seed that was planted mere moments ago by the promise of its loss. The equivalent of words being trapped in your throat as you tilt your head back to scream towards the sky, for you are no longer rooted in the present as your mind races back and forth between your future and the ideals you’ve previously held. Your esophagus vibrates in a mix of shock, fear, judgement, relief, anger, confusion…

Yet there is only silence where the sensation is deafening. 

I never thought this would be a contemplation I would have to make, but it was one that led me to debate whether or not I was going to preserve my fertility.  I was making a decision for a future self with my current sense of what was important to me. (Which, as I mentioned before, was heavily influenced by frozen dairy product and power suits.) A decision that required me to foot the bill with savings that seemed to be dwindling at a faster rate in recent weeks.

And truthfully, I might not have frozen my eggs it if it hadn’t been for the generosity of organizations like Team Maggie For a Cure and First Steps.  Organizations that understand the importance of fertility preservation for cancer patients. Organizations that step up to the counter with you when your number is called earlier than planned. 

And though these resources are few, those contemplating fertility preservation due to their cancer diagnosis at least have potential access to some financial support. I can only give you the viewpoint of a female cancer patient who at least had a little rainy-day savings and a couple financial assistance applications with which to contemplate the preservation of her fertility. Not everyone, especially those in marginalized communities, even has the luxury of contemplation. 

Contemplation implies a choice, an ability. The margin of ability narrows when the average cost of freezing eggs ranges from $10,000-$15,000, and the average cost of sperm preservation ranges from $500-$10,000 (depending on the procedure). You can add between $300-$500 for annual egg/sperm storage (so yes, you technically have to pay rent for your children even before they are born…). 

These are all costs that majority of insurance companies (for those who have access to it) still do not cover. And something insurance companies may be even less inclined to support if the door to the discussion of what constitutes personhood is unlatched and pushed wide open. 

This conversation may cause ripple effects into assisted reproductive technologies, opening the industry up to litigation that it had once moved past. Standards of practice that once propelled the industry may now need to be re-evaluated, potentially narrowing even further the avenues of family planning for those whose womb-fruit is not self-pollinating. Potentially narrowing the luxury of contemplation. 

We may find ourselves backing down the long and arduous road leading to the current state of assisted reproductive technologies that took decades to pave. A regressive journey that will once again skew access and fog the window of Reproductive Justice. 

I hope we do not achieve these potentials, possibles, and maybes. 

I hope the egg I cradle in my hand does not detonate. 

The light hits the curved shell, revealing the fluid that rests just below its surface. The crystals holding back the liquid now beginning to fracture at the weight that is pressed upon it. 

Fractures I was beginning to feel back in that examination room, as my doctor asked if I had any more questions. As I was being told I would need a stem cell transplant and would be infertile at the age of 25. 

Words have a funny way of escaping me in moments like this. 

“I don’t think so?,” was all I could squeak out. 

Clearly on a tight timeline, my doctor handed me a giant stack of consent papers to review and sign so we could begin the marathon of tests that was to come in preparation of my transplant. 

I began to wonder if I should finally be the first one to address the increasing velocity of the room when my doctor stepped out, leaving me alone in the room with the overworked nurse and a social worker who seemed like it was her first day on the job. They stared at me with slight frowns weighing down the corners of their mouths. 

Before leaving, they handed me a book on stem cell transplants that looked like it was written and illustrated for the average reader of Highlights magazine. (Pretty sure it was titled, “So You Want to Have a Stem Cell Transplant…” or something like that. I can’t quite remember. I burned the book to keep warm one 87-degree morning after my transplant. One of the many unfortunate side effects of a stem cell transplant… They should have put that in the book now that I think about it. Maybe I should have read the book. Damn.)

The Highlights Stem Cell Manual sat next to me in the passenger seat as I pulled up to the stop sign outside of the hospital exit. Alongside it sat the egg, rocking gently with the slight hum of the car as I leaned my head against the steering wheel. I let out a sigh and the remaining Reserve Tear as I looked at the egg I would need to cradle and take care of not merely for a passing grade, but for my future. 

It has been almost four years since I was tossed that egg. 

There are days I wonder if my future children are sitting in a freezer or still tucked away safely inside me. 

There are days I wonder if my future children have already been born. As they experience their firsts, I continue to cradle the egg until I am ready to turn it in. 

There are days I wonder if my identity as a parent will end at “Aunt.” 

There are days I wonder if I truly am infertile. If I will discover that the ripples of my cancer could not be contained within the few years surrounding my treatment. 

The totality of the physical ramifications yet to be felt. Like the rotting of a fruit. 

Fruit sprayed with pesticides to ward off outside forces with malicious intent. Fruit that has begun to shrivel. Seeds that have begun to die.

There are days I don’t know. 

There are days I do.

Any more questions?

---

Cited Works:

“Paying for Treatments.” Alliance for Fertility Preservation,

  https://www.allianceforfertilitypreservation.org/paying-for-treatments. Accessed 5 May 2022.

Marsh, Margaret and Wanda Ronner. Why new anti-abortion laws make it harder to conceive. The Washington

Post. 15 Aug. 2019. https://www.washingtonpost.com/outlook/2019/08/15/why-new-anti-abortion-laws-

may-make-it-harder-conceive. Accessed 4 May 2022. 

Isabel Galic, Olivia Negris, Christopher Warren, Dannielle Brown, Alexandria Bozen, and Tarun Jain. Disparities in

access to fertility care: who’s in and who’s out. F&S Reports, Volume 2, Issue 1, 2021, Pages 109-117.

https://doi.org/10.1016/j.xfre.2020.11.001. Accessed 10 May 2022. 

My dinner guest

Why did I invite her?, I think as the ceramic dinner-plate cathunks on the lopsided wooden table, my mind pre-occupied as it runs through the seemingly mile-long to-do list before dinner. Pull chicken. Toss a salad. Do I want salad? How old is that spring mix bag that’s been creeping in the corner of the vegetable drawer? Am I supposed to keep it in there? S***, I think it was BOGO salad mix. There’re two salad bags creeping in the drawer aren’t there? Why do I pretend like I eat that many salads when I’m grocery shopping? I hope those tomatoes aren’t too wrinkly. —GRRRROWWWLL

My stomach interrupts my train of thought, reminding me that we have only eaten an apple so far today. I check the time. The day has gotten away from me. Dinner will be ready in 45 minutes. Anything beyond 7:30pm eating leaves my dinner-guest frenetic and uneasy. If she had it her way we’d be eating at 5:00pm. 

I don’t eat that early. Largely because of work mixed with fact that I don’t have a personal chef who can prepare my meals for peak metabolism times. (Please save any suggestions of meal-prepping for your upbeat neighbor or the eager coworker who has claimed that this is “their year”…I stopped claiming any year to be “my year” thanks to the four year stretch I like to call “Cancer, Covid, and Inner Chaos” and I prefer to procure those black and clear food containers* for my China Palace leftovers rather than for portioning out my protein. Good for them though. I have a coupon if your neighbor/co-worker is interested.)

(*I won’t get paid from any purchases made on this link because I have no sponsors. And because the link doesn’t go anywhere.)

Today, however, I am not eating at 5:00pm out of principle…and because I lost track of time and that’s when I put the chicken in. But mostly because I’m drawing a line. I abided by my guest’s eating rules longer than I care to admit. 

My mind blurs in its duality of support in my decision, simultaneously admitting triumph in my unwavering stance on tonight’s mealtime while overheating in its fixation on making tonight’s dining experience perfect, even though nothing is seemingly ever to my guest’s liking.

She’s an old friend. Though I prefer the term “acquaintance” at this point. We stay in touch but I try to keep my distance. It seems there are a few times a year where we inevitably reconnect, albeit briefly. Surface level conversations rather than a deep rekindling. I’ve worked hard to make sure of that. 

These visits seem to most frequently fall during bouts of unrelenting stress or after I see advertisements for tropical getaways…You’d understand if you met her. Though I hope you never do. 

This particular reunion is courtesy of the New Year. A time when society and the media urgently remind us all of the importance in assembling our to-do lists of self-improvement.  Apparently January 1st marks a clean slate to become everything you have ever wanted to be and more. A  fresh new year to become a better hostess. A better lover. Or most importantly, a better physical representation of the human species. 

Don’t get me wrong. I am all for setting goals. I just prefer they not be impressed upon me by preconceived notions of what I should aspire to look like or be.  The clock struck midnight and my phone was already divulging the secrets as to how I could keep the weight off this year. 

“We know last year was a bust. I mean, look at you. Follow our yellow brick road to success with these three easy tips and the weight will fall off.” Alright, 1) It could be argued that the past couple of years haven’t been great, but it’s not because of what I’ve shoved into my face hole or how many crunches I’ve failed to do. Which I can tell you right now is a lot. What can I say? I’ve discovered that I prefer to not spend my free time looking like an overturned turtle that can’t right itself.  2) I don’t think weight should just “fall off” anyone and if it does, I think that warrants medical attention. Immediately. And 3) Let me just click my heels three times…

Anyways, did I mention my acquaintance is somewhat narcissistic?  Probably not, because who talks like that when introducing someone? Me. I do. Right now. She’s narcissistic. And judgmental…which I realize often results in a bit of a glass-houses situation but it’s true. Trust me.

Once she slithers her way into your life she becomes all consuming, wrapping herself around your brain until she constricts your thoughts into her own. You rewire your mind to alleviate the pressure of insecurity she incessantly whispers into your ear. What to eat. What exercises to do. What to wear so you aren’t aware of the exercises you didn’t do or what you’ve eaten. 

Your chest tightens the minute you step out of the order she has prescribed, as if the whole world you’ve built together will crumble in an instant. As if you’ll be left alone to hold up this mirage of perfection like some superficial Atlas.

Why do you want to keep holding up this illusion of perfection? You forgot the answer to that question early on.

But oh how exhilarating it is when you’ve done right by her. The feeling of superiority and accomplishment wrapping you in its warm scaly blanket. Of telling yourself that you’re safe within the confines of the dangerous box she’s helped you build. Of forgetting what it meant to be free of the mental hoops you now find yourself jumping through every time you dare eat, and every moment in between. 

GRROWWWLLL

My stomach reminds me again that I don’t have much in the tank as I finish setting a fork on the table. If I eat now then I won’t be as hungry for dinner, and then I really shouldn’t have dessert. Am I bringing out the dessert? If no then I might have a snack. She might actually be cool with dessert this time though…  

Since when did having a snack become a three ring circus of deliberation?

Ahh that’s right. I forgot she was the one who trained me into becoming the great mental contortionist that I am. She was the one who taught me how to twist and fold my brain into pretzels all so I would not succumb to eating one. She affixed the handcuffs of food anxiety to my wrists and filled the plexiglass tank in which I stood with equal parts beauty standards and a healthy self-loathing. It was up to me to figure out how to escape.

I just had to realize I wanted to first. 

My lungs burned as they filled with self-contempt. My vision blurred as the tank and my mind were distorted by a clarity of what I lacked. (Her assistant helping clarify with more visual aids than I could wish for in the form of photoshopped magazine covers and skewed clothing sizes.)

Perhaps if I made myself smaller, the handcuffs would fall off?

I did not know this would only make them tighter. 

I should clarify that it has taken years (and the privilege of working with a therapist) to come to the realization of what our relationship was. It has taken years for me to realize the more I tended to her, the more marrow was sucked from my bones, weakening the legs from which I needed in order to stand on my own and walk out of the mental cell I was confined in. It has taken years to mostly untangle the threads of control she had over me.

Not all who’ve met her are as lucky.

I say that I’ve become “mostly” untangled because she doesn’t exactly let you get away with writing her off completely.  She knows the windows of opportunity to make her presence known again and again. She’s known them since we met in high school, when I was a shy 9th grader who was eager to be accepted amidst her tanking self-confidence and spurts of questionable taste. (I’m waiting for the bottle-cap belt and the snake ring that turned my finger green to come back in style…we’re getting close. I can feel it.) 

CLINK! the water glass yelps as it clips the edge of the dinner plate. I am yanked out from the dimly lit corners of my mind where I have once again recessed. (Maybe next time I’m back there I’ll remember the name of that librarian in first grade that smelled like Patchouli and Spearmint…)

As I lean over the table to set a knife next to the plate, I become painfully aware of the snugness of my waistband. Another one of her main teaching points. Maybe that’s why I don’t like fitted pants anymore. I used to love them. Even asked for a pair of bright orange dress pants for Christmas when I was 8. (Because all small children want to look like a traffic cone who’s on a job interview.) Now I prefer to order a size up. Best my legs and waist not feel too loved.

In this acknowledgement, my elbow instinctively touches my hipbone while my hand contorts and lowers to touch the other side of my waist. Some anatomical game of connect the dots that will forever be etched in my mind. A checks-and-balances of physical attraction and mental peace that is inversely proportional to the amount of space between my forearm and waist. A habit I thought we’d long forgotten.

As my index finger presses into my hip, it is not merely my flesh against bone that is pinched. The self-confidence that has slowly been rebuilt over the years is tweaked, and I get the sudden urge to look in a mirror. To turn to the side so I can see what shape I take up in this world and assess wether or not it is suitable. 

For who? I forgot the answer to that question long ago. 

She taught me how to feel more superior the smaller I became. How being asked, “Have you lost weight?,” was a badge of honor, a slight smile always forming in the corner of our mouths as we feigned ignorance…even if there was concern in the eyes of those who asked.

I used to take comfort in her support. The embrace of achievement as the numbers on the scale dropped to 118 pounds…then 108…then 97…Gravity releasing its grasp on me as I ran more and ate less. All while she tightened hers.

My daily eating habits became an opportunity mandate to become a “better” version of myself than the day before…Better as defined by her. At first, better meant less chips and more fruits and vegetables. (Something I might argue is still an admirable goal for anyone privileged enough to curate their diet in this manner.) Then better meant no snacks. (Should have been a red flag…) Then better meant no fat. (Goodbye ice cream, mayonnaise, avocados, and just general happiness.) Then better meant eating just an apple a day. (A habit that would do quite the opposite of keeping the doctors away. Might’ve taken that one a bit too literally.) 

If my diet was a children’s book, it would not be a best-seller. A sort of inverse to the Very Hungry Caterpillar. Instead of the vibrant purples and yellows of grapes and roast beef sandwiches growing into the vibrant reds and pinks of hotdogs and ice cream, it would slowly wither from a vibrant rainbow of childhood favorites into a sole red apple.  

It was a gradual shift in my diet. Something I was able to conceal from the world behind articles espousing how to eat healthier and cross country practice.  Something I was able to conceal from myself behind her praising me every step of the way.

As I stand at the table, my mind wonders which box the scale is hiding in, long dormant from years of retirement. I’ve tried to not care what numbers gravity is wracking up these days. I got tired of checking three times a day. I got tired of trying to stay in my box, or fit into a smaller one like a downsizing hermit crab.

DING! A friend has sent me a picture of the brownies they just made. My stomach growls and my mind lights up. Yes please. My mind dims. We aren’t “indulging” today. My mind pulls. I hate the word “Indulgence.” I know I will make these later and then tell myself we need to stop eating sweets. 

Why? I forgot the answer to that question long ago. Maybe my phone will tell me in a few days time. 

A weight settles in my chest as I think about the time I wasted worrying about my physical appearance. About the time I continue to waste contemplating what I should or shouldn’t eat. About what pant size I should or shouldn’t be. Walls we built long ago to keep us safe. Safe from being undesirable. Safe from being wild. Safe from taking up too much space. 

What difference could we spark if we received greater exposure and encouragement to change the shape of society rather than into what shape society would like us to change? What if I did not worry so much about the air I disrupted with my physical form, and instead considered the disruptions I could make with air in my lungs and the words in my throat?

The concept of “beauty” and what it “looks like” has undoubtedly shifted over the last decade to include more than a size 0, voluptuously preened hair, and piercing eyes. Which, to someone who is not a size 0, has a borderline receding hairline that never quite grew in (I can’t even blame chemo for that), and eyes that squeak when rubbed, is something I acknowledge took far longer than it should have…But I still crave a world in which physical beauty isn’t the topic of conversation. Where bodies (and someone’s worth) aren’t debated in terms of what should be “considered beautiful.”

I crave a world in which they aren’t debated at all. 

I believe it is for this reason that we continue to walk past each other with our knowing glances. The collective understanding of what it means to shape ourselves to fit the mold we were exposed to as children. The verbal support that “all are beautiful,” yet the silent burden of only a select few truly feeling what it means to be “good enough.”

I often forget how stunningly exquisite we are in our sheer design. How many delicate systems need to work in order for our hearts to take a single pulse. For our lungs to fill with air. 

We manage to trivialize this magnificence with a misallocated importance placed on how much fabric we need to cover it up. 

We’ve followed the wrong aesthete for too long. 

It is time we find a new one.

It is time we walk alongside one another and whisper, “Keep taking up your magnificent space.”

We must whisper until we are yelling it.

We must yell until those six words mean more than our bodies.

I wish I could go back and encourage my younger self to do so. I wish I could steer her away from how fragile we would become, when we would attempt to make ourselves smaller and smaller, as if the numbers on the scale were inversely proportional to our worth. When we felt the world preferred us more the less space we took up. 

If only I had whispered to myself long ago. My dinner guest wouldn’t be making her routine appearance if I had. 

BEEEEP BEEEEP the oven alarm un-relents, pulling me once again from the deep corners of my mind. (Mrs. Kirkpatrick? No, that’s not it. Mrs. Gentry?…Maybe I’ll find it next time.)

I realize I am still poised in this antiquated stance, arm draped across my waist. She’ll no doubt remind me that there isn’t as much space between my waist and arm as here used to be. Hell, she already has. Though this thought doesn’t bother me like it used to, it is still a thought I have. 

Why do I even invite her? I think as I lower my arm and move to relieve the oven from its duties. As I walk away from the table I’ve been preparing, I catch a glimpse of myself and the single table-setting in the freckled mirror that’s hung safely out of critique’s way. 

I try to feel the strength of my marrow-filled bones and the innumerable machinations that are contained within the space I hold. 

“Keep taking up your magnificent space,” I whisper to myself, hoping I am loud enough for my guest to hear me.

To anyone reading, keep taking up your magnificent space.

We’ll Be back tomorrow

We sit at Grandpa’s side as he lay unconscious, the planned two-week separation between us expedited to a mere 72 hours. Serene music plays on the television where football played in a continual loop barely two days prior.  

The peaceful music makes me anxious. It feels as if the air has been sucked out of the room. 

Our hands hold his, praying they will squeeze back. Wishing his eyes will open and offer one more of his sly winks, as if this was one last joke of his. His grand finale. We keep the door to his room closed, hoping we can keep Her at bay a bit longer. Her distant footfalls echo down the hall outside. They seem louder than when we were here last. Closer. 

Death. 

The Period at the end of all of our sentences. Finite and Unwavering, She is the revolting Sister that loudly reminds us of the bounded timeline upon which we are placed. And if we choose to not recognize Her tugging at our sleeves, She will make Her presence known nonetheless. There is no Life without Death in our fragile state, yet we are often distracted from this fact by the day-to-day delirium of being told what to need and want, expelling our fleeting time and energy to obtain such things. All while Death waits. 

She has all the time in the world for us to forget that we don’t. 

She has all the time in the world for us to ignore Her presence, until She steps out from the Shadows and takes one of us by the hand and leads us Elsewhere. Only then do we get a glimmer of Her piercing eyes. Eyes made of mirrors. Mirrors reflecting all of our regrets and triumphs. Mirrors where all of our should have’s, could have’s, and did’s stare back at us. Scream at us. Decorate us. As we face these realizations, the silence of existence is deafening. The tape of our life plays in rapid-succession. The memories of our past and the future-that-could-have-been projected onto the backs of our eyes. The inevitable tick tick tick of the reel reaching its end fills the silence. 

I was awakened to this understanding as I sat treatment after treatment, hooked up to various monitors and IVs pumping me with the chemical concoction of the day.  And I am reminded of it now, as I sit in my Grandfather’s room, watching as he slips farther and farther away with each passing moment. Listening as his breaths shorten and Her’s draw nearer. 

I know there is nothing I can do or say at this point to stop the inevitable. To stop Death from letting Herself in. So I cling to each moment as if it is a mere thread. A thread that, if pulled, would unravel the entire fabric of his body and leave nothing but the warm imprint of where he lay. 

The Hospice nurses swarm into the room to adjust Grandpa’s position, and I quickly shut the door behind them. I brace myself as I lean against the door, staving off Her thin fingers from tugging on those delicate fibers.

The room falls quiet as Grandpa is lifted and lowered back onto the bed. We wait for either silence or one more rattling breath to fill his sunken lungs. I feel Her breath on the other side of the door. Cold. Expectant. 

We cling to each of his exhausted breaths. The long gaps between them lasting what feels like minutes and then miles. We hold our own for one more of his.

Finally his chest rises and so do our heads. She leaves, for now.

As I sit back down on the overstuffed chair,  I look around at the various photos of my family that adorn the room. The refined blobs of ink composing the past and a longing of what our former selves were. My eyes scan over all of the frozen moments, and I find myself aching for the ones that occurred just before or after the shutter closed. 

The slight adjusting of hair right before the family portrait was taken. The licking of fingers after cutting the wedding cake. The turning back to the sink to finish the dishes while the tv hums from the next room over. These are the moments that do not exist in ink. They are the ones that only existed in flesh and undetermined timelines. 

They say a photo is worth a thousand words. I’d give for just one more of yours right now, Grandpa. 

I wring my hands as I look to the ground, thoughts of how simultaneously wrong (for you) and right (for me) everything needed to go for us to get to this point. The various cogs and gears of my body continuing to grind and push onwards while yours slow down. We poured drugs into my veins to chase out the imposters who threatened to take everything. The slash-and-burn equivalent to a cure. There was no cure for you. Your fevers continue to spike as your body fights the imposters that could not be chased. 

I am of your blood, but the hands we have been dealt are not the same. 

Yet, as I sit here fighting back Death from turning the door-handle and letting Herself in, I realize something. People consider Death the tragic figure in our lives, and for some She undoubtedly is. That doesn’t feel far off in this particular moment. Yet, I think a greater tragedy is the collective assumption of how long all of our sentences will be before She places the Period. 

Death becomes the Tragedy when She arrives before Her presumed appointment time.

Sadness. Anger. Regret. These are all things Death undoubtedly carries with Her. But tragedy seems to come with certain parameters of unexpected loss. And as we go along, assuming what we are owed in terms of time upon this terrestrial plane, we are collectively numbed by the whirlpool of societal requirements for a “full life,” without appreciating the fine line we all walk on and the pain we all share. (Undoubtedly some more than others.) But we have all lost. Homes, jobs, those we’ve loved.  Yet we quickly forget this when we march onwards in the power struggle of claiming our own freedom (financial, societal, emotional), only softening when it is time for Her Appointment. Only when we are forced to look down and see the tightrope we all tread upon do we realize how amazingly complex and poignant we all are. At least, I like to think most of us do. 

After my transplant, I thought I would learn to forget about the trivial matters. To appreciate the small moments of the in-between, like the ones from the photos I long for now. To drink in the beautiful nuances of strangers and family alike. After all, who knew how many opportunities I had left. Why waste them on fretting bad traffic or the curt email I just received. 

I thought me achieving the freedom of living each day untethered to an IV would finally drown out the cacophony of comparative noise and judgements. And some days it has. But most days I find myself falling into the rabbit hole of discontent, the laundry list of things I want and should be growing longer until I am drowning in a sea of disgruntlement. Why am I always falling back into—

My phone dings with Tweets and Instagram notifications. The world calling me back to the watering-hole of comparison and “needs.” Focusing my attention on the latest gaming console or how many followers I don’t have.

Ah yes. That’s right. The world continues as others are marked indelibly with Her effortless grace, each of us collecting our hidden scars and running to join the ones She has not yet taken in the Life that has moved on. The Life that is constantly reminding you to catch up. To forget the silent acquaintance of Grief, if only for a moment.

Yet Grief is the friend who is always ready to pick up where you left off. Each turn of the knife cutting a bit deeper than you last remember. 

The knives seem to be getting sharper these days. The visits more frequent. 

My Mom gently touches my shoulder, it is time to go. I give my Grandpa a kiss on the forehead, inhaling deeply. The warm smell that has always been distinctly his fills my lungs where I tuck it for safe-keeping. A mix of flannel and bar soap.  

We love you and we’ll be back tomorrow. 

As my Mom and I close the door behind us, I wiggle the handle to make sure it won’t budge under Death’s grip. We walk down the hallway towards the front door as I listen for Her footfalls. All is silent except for the drone of the televisions in the common room and the shuffling of a resident’s feet. 

—

I should have barricaded the door. I should have stacked these words in front of it so they would fall like marbles with any slight movement and cast Her sideways. 

The dull ache from where Grief’s knife was plunged earlier that morning reminds me of why we are here. Why I am standing with my Mom at the family cemetery plot, taking note of where Grandpa will be buried.

The grass is soft beneath my feet. The air cold upon my face. 

I steel my face towards the wind. Hundreds of mothers, fathers, bigots, and saviors resting peacefully a few feet below my own. I wonder how peacefully they really do sleep. While the agitated world around their eternal bed continues. While the world continues to step forward and backwards day after day. A constant oscillation between progress and regression. 

And in that moment, I find peace standing amongst those whom Death tucked in long ago to rest. It’s as if the Earth knew that all should remain quiet here. Even the sky, breathing soft sighs of relief, could rest the thick blanket of grey clouds a bit lower in the sky. A welcomed repose from their weight.

We no longer hold our breath. We simply hold each other. 

Yet Grief and Death linger in the breeze. There is no sudden outcry in surprise. It is the slow, undulating waves of unrelenting sadness that crash upon you moment after moment, the quietness of a fleeting reminder that you’ll be ok as the pain recesses like the tide. And just when you feel like you can breathe, the waves come crashing down again, reminding you of the loss of what was and never will be again. 

A reminder that there are no doors for me to lock. No fabric to protect. The threads have been pulled.

We love you and we’ll be back tomorrow. 

---

IN MEMORY OF GRANDPA

---

DWIGHT STREET

There’s an eerie quietness to the House as we sit, sifting through old family photos and sorting them into an “Ours,” “Theirs,” and “Toss" pile - a pile reserved for photos of nameless faces whose remaining threads of familial connection have finally been severed. 

It’s just my sister and I sitting on the old tan shag carpeting of the living room, rummaging through the photo bins as we wait. The carpeting feels like wool scratching my bare legs as I sit cross-legged in the middle of the floor. I’m the idiot who wore shorts, I tell myself as I try to nonchalantly itch my legs in an attempt to not draw my sister’s attention. Normally I wouldn’t worry about hiding any discomfort brought on by my shoddy wardrobe choices but it’s 48 degrees outside and I could use one less reminder from Kenzie that I was always the dumbass who wore shorts up here in December. Apparently Florida fashion doesn’t transcend midwest standards once the temperature nears zero. 

But there we sit, with merely the dull crackle of the Furnace and tap tap of falling leaves hitting the warped glass of the House’s old windows. Windows that have stood vigilant over the neighborhood for the last century. Windows that watched my Mom and her Brother grow up and then eventually my sisters and I.

A tightness forms in my chest as we sit waiting. Waiting for our Grandparents to come back home, so we can put all of their things back on the various shelves and pretend like nothing ever changed. Waiting to forget what they have forgotten and the diagnoses they have each been handed. Waiting for something we both know will never come.

Kenzie gets up to get another garbage bag, and I pull out another stack of photos. Up comes a waft of air, long trapped between the faded ink and frozen smiles. It smells of must and old paper. Perfume of the past. A knife twists. A photo of my 8-yr-old Mom grinning wide as she sits alongside her brother and parents in the very same room I find myself in begins to blur as my eyes fill with tears. I so strongly want to turn back time, so Mom can be that small again. When the only pain she has known is falling off her bike, the only loss she has grieved is of her front tooth, and the only “goodbyes” she has given are temporary.

I push back more tears and wipe my eyes as Kenzie re-enters the room. Her silent presence startles me. The Grandfather Clock perched in the corner of the living room always rattles its chains in disagreement if someone dare take more than a tip-toe across the neighboring room’s faded blue berber carpeting. I look behind me, wondering why the Grandfather Clock hadn’t given me a heads up this time. All that stands in its place is a bin of my Great Aunt’s old yarn skeins and a few empty boxes. The chimes, merely phantom memories, ring loudly in my ears as Kenzie dumps the “Toss” photos into a fresh garbage bag, our parent’s wedding portrait at the top of the heap. 

A different knife twists. 

“I feel weird throwing that.” 

“Mom doesn’t want it,” Kenzie reminds me. “You can keep it if you want to.”

I don’t. I’m nostalgic but not delusional. 

The Furnace continues to keep us company while the rest of the House sleeps or offers a weary sigh as it shifts its weight in an attempt to find a more comfortable position.

“What time are they coming again?,” Kenzie asks. 

“Uhh, 11. So should be here in a few minutes,” I respond as I check my watch. It yells at me to stand. I turn back toward the photos. 

 “Mind taking the lead on this one?,” Kenzie asks. 

“Not at all.”

The House and I let out a simultaneous sigh. 

“Do you know who these people are?” Kenzie offers an old black and white photo of a handsome yet stoic group of people. 

“No idea. It’s not Grandpa’s family.” 

Kenzie moves to discard it. 

“Wait. Don’t throw that. I don’t want to anger anyone,” I say, motioning to whatever Spirits lay in wait, ready to make hell for whoever dare cast their memory aside. 

Kenzie nods. “Good call.” She tosses the photo into the “Ours” pile. 

A soft breeze blows through the open screen door that frames the back wall. A group of kids giggle in the distance. We are surrounded by dusty tchotchkes and worn furniture that someone will eventually buy for their mid-century modern living room. They say style is cyclical. 

If only memory worked that way too. 

A car door closes on the street out front. I stand up, putting the unsorted photos in my hand back into the bin. 

“Here we go,” I mumble.  

“Just remember what Mom said,” Kenzie offers.  

“Yep.” 

I go to the sagging screened-in front porch, a part of the House we never spent much time in. (Largely because we only ever used the backdoor.) I guess it’s fitting that we aren’t doing things the “normal way” for this visit.

“Hello!,” the real estate agent chimes.  

“Hi!,” I attempt jovially, as my voice catches in my throat, some form of protest in welcoming this stranger into the House so we may expose Its soul and scars, all while attempting to conceal our own. 

“Come in. Please watch your step. Obviously the front porch is rough…” I nervously fill the silence while my stomach turns, knowing the man and woman who worked tirelessly for this House cannot defend it from their nursing home rooms. 

My sister introduces herself and apologizes for the mess. 

The real estate agent sympathetically brushes it off. 

“It’s just us today. Mom is with Grandpa and Hospice,” my voice wavers. 

Words spill out of me before tears can.  

“But I can show you around and answer any questions. The main thing Mom wanted relayed was that the House needs to be sold as-is and not contingent upon financing.”

The agent nods and senses the uneasiness. She takes the lead while she pulls out her laser pointer.

“Makes sense. Do you want to show me around or prefer I go alone? Either way works for me. I’ll be taking measurements and might have a few questions but this is mainly to get a sense of the state of the house so I can make the best possible assessment for the listing.” 

I stumble over my words as my brain and heart debate whether I should lead the tour. Eventually I offer to show the agent around. 

Kenzie looks on as if willing me strength to keep it together.  

The agent and I step into the next room with the Furnace, leaving Kenzie to continue sifting through the bins of long-forgotten memories. 

Our feet pad across the thin carpeting, the old House groaning with each step. The familiar black dining room Table sits in the corner as if it’s in timeout and waiting to be allowed visitation rights again. 

“This was always the dining room,” I explain. “The Table was set up here and there was a small Couch along this wall.” I point to a now empty wall. 

I frown slightly as I pause. I wonder where that went? 

The soft creak of the real estate agent shifting her weight brings me back. I turn toward her and notice the Grandfather Clock standing next to the Telephone. Not sure how I missed it before…

The old Phone hangs loyally on the wall, its mile-long-chord slightly kinked from years of being stretched to its limits. The Clock leans tired against the window, a large raised hump in the floor sending it kilter. We take a step closer toward the dormant timepiece. Its aching chains still don’t stir. Its worn out hands long retired from measuring the time. 

I point to a door in the far corner behind the Furnace. A door I never opened in all 25 years of visiting the House. 

“That leads to the basement. We can go down later if you want,” I offer, putting off the visit for a bit longer as if the 3-ft-long centipedes and monsters I heard tales of as a child are still waiting for me. 

The agent nods and follows me as I walk through the doorway of a humble room just to the left of the dining room. I look up as I cross over the threshold, half expecting the countless holiday cards that adorned the wooden frame every Christmas to still be there, offering a “Merry Christmas and a Happy New Year!,” to all who pass by. A couple pieces of yellowed tape still cling haphazardly to the molding, their reason for existence having been plucked from their grasp many Christmases ago. 

“This was my Grandparents room,” I say, voice catching in my throat. I realize that this is the first time I have stepped foot in this space. I feel as if I am looking in on a small piece of the world that was never meant for my eyes. An accordion door always stood guard, keeping private all that I am now seeing. I look back to the doorway, searching for the noble sentinel. It abandoned its post long ago, when our eyes were no longer around to be shielded. 

I feel like a giant in the tiny room my Grandparents shared for most of their lives.  A small section of shag carpeting looks to be freshly laid, a clear outline of where their full-size bed stood for 53 years. The rest of the room’s flooring is sun-bleached and worn. 

The room is now filled with boxes of my Grandparents’ old clothes and Christmas decorations. I pick up a small deer ornament that hung faithfully on the Christmas tree every year. I turn it over in my hand as the agent takes her final measurements. It’s lighter than I imagined. 

“Huh,” I muse quietly. 

The deer smiles up at me as it did every year. Its slightly disheveled Santa hat narrowly missing its eye.

The agent hangs hesitantly by the door, ready to move on with the tour. 

I set the ornament down and walk towards the doorway. One of my Grandfather’s countless flannel jackets hangs limply from a box by the doorway, its arms outstretched as if asking to feel the warmth of skin again. My hands give it a squeeze as I walk by. 

We walk through the kitchen, all of the appliances now removed like rotten teeth.  Dishes and cooking utensils roost on the folding tables lining the edges of the room, as if recently evicted from the cupboards they lived in for decades. I continue past the cabinets that always smelled of expired spices and something I could never quite place. A heavy, stale, and piquant stench that would rest squarely on your tongue if inhaled too deeply. I would hold my breath before opening the cupboard whenever Grandma needed the chili sauce for the Christmas Eve Lil Smokies. 

I open that same cupboard as I walk by, trying to fill my lungs with the pungent air I deprived them of for so many years. 

I explain where the stove and fridge used to be, peeling linoleum tiles and grease stained walls filling in the blanks where my wavering voice trails off. The old brick-patterned vinyl wall-covering is exposed from beneath several layers of previous kitchen updates. Each layer representing the distinct decades they stood watch over, like some carcinogenic version of etching my height against a doorframe.

The ghost of the massive jar of pickled eggs that sat atop the icebox for years lingers in the upper right corner of the room as I think about the hours I stood next to Grandma at the stove, helping with whatever I could to avoid whichever football game was on in the living room. 

A quiet falls over the space and I hear Kenzie digging through more photos. There is no football on today. There is no stove to stand at. Even if there was, Grandma is wary if I stand too close these days. I would be wary of a stranger too. 

I close the cabinet, its white paint scratched from years of opening and closing on command.  The tinny cathunk of the bent metal latch clamping shut mixes with the plastic crunching of our feet on the dry linoleum floor. 

The agent and I step towards the back mudroom, the only entrance to the House I have ever known. The temperature drops a few degrees as we cross the threshold. The two-inch gap at the bottom of the back door that has grown over the years doesn’t help. As I pass through the kitchen doorway into the mudroom, I glance to the small square of floor next to the sink where the trashcan used to sit. Grandma’s boots have taken its place in the small alcove, their tongues pulled out, still drying from their last trek through the snow several years ago. 

They sit patiently, waiting for my Grandma’s return. They will remain there until either sold or thrown away, but that is a secret I keep to myself. 

“This room isn’t heated, is that correct?,” the agent interrupts.  

“Um, yes. I believe that is correct. The heat is just the furnace you saw and the pipes that run upstairs.”

Why am I nervous? 

This House is tired.

I’m tired. 

I point out where the washer and dryer used to sit. For a flicker I see Grandma helping Mom throw our dirty clothes in the night before we have to leave. My Grandma hands me my coat from the Coat Rack before I step outside to play in the snow.

Grandma fades and in her place is the agent, taking her measurements. Measurements that will fail to represent just how much this House can hold. As I watch our memories be reduced to square-feet and flooring-finishes, I notice Grandpa’s work jacket hanging on the Coat Rack.

It remains where it always has, facing the door, waiting expectantly for Grandpa to return so It may keep his frail bones warm. 

I catch a glimpse of myself in the vanity that hangs at the foot of the steps to the left of me. My eyes are slightly red from the on-and-off waterworks that seem to be pouring out of them these days. I open the door, hoping to find everything in its place as I last remembered. The pack of bandaids seemingly kept on hand just for the grandkids. The antique eye-wash cup I thought was a shot-glass. The wiry bristled brush my Grandma would use to hastily groom her short black hair into place before rushing out the door for her shift at the bakery.

The vanity is empty, except for a few loose hairs and a lost button. 

The agent waits to continue on with the tour. I turn the porcelain handle of the old wooden door that separates the upstairs from the rest of the House and reveal the Exorcist Steps leading to the second floor. The same shag carpeting from downstairs covers the steep stairs. The long wooden cylinder railing that has always clung to the wall guides us upstairs. We each grab ahold and begin our ascent. I hold on a little tighter for this trip. 

“These are some nice sturdy steps,” the agent acknowledges. 

“Yeah,” I nervously laugh as I look down at the treads, long worn at the edges (no doubt from the many years of my sisters and I riding down them). We round to the top of the steps, and I point out the closet just off the end of the landing. 

I slide the slightly bent latch around to open it, half hoping that Mom’s prom dress and our Grandparents’ hunting jackets would still be hanging inside, preserving a time that has long passed. 

“There are some large cracks in here,” I say anxiously, as if this is a test and I am waiting for the agent to laugh at our memories and scars. 

We both look in and see the fracturing of the walls, long tired from holding on to so many secrets. 

The agent kneels down and looks underneath the two layers of old linoleum that line the bottom of the closet, exposing hard wood floors that were there long before I was. 

“Your Grandfather did a good job of taking care of this place. All of this is standard with these older homes.” 

My stomach eases a little, knowing Mom would take comfort in that. 

We close the closet door and I make my way to the bathroom while the agent moves towards the room at the end of the hallway. I check the toilet to make sure it has been flushed, the plumbing having slowed down over the years. I watch as the water sluggishly empties out of the worn bowl.

Before I exit, I open the bathroom vanity and a waft of air hits my face. It smells of Irish Spring soap and Grandma’s hairspray. I inhale deeply, wishing my lungs could hold the air forever, so I may release it whenever I choose to go back in time. So I may not forget. Forget the hours my sisters and I spent in the old claw foot tub playing with Disney water whistles and putting on our bubble beards before bed. Forget when we would spy on the adults during the Christmas party, peering down through the floor vent in the bathroom and scattering the minute we heard someone mention they needed to pee. Forget when I would sneak upstairs to weigh myself in solitude, when I stopped eating Grandma’s Christmas Eve Lil Smokies. 

I close the vanity and catch up with the agent in the back bedroom.

“It’s not uncommon to have to walk through one bedroom to get to the other in these old homes,” she said, as if knowing my family’s uneasiness with the state of the House. 

“Yeah, we would stay in here on the bunkbeds and our parents would sleep in this side room,” I explain. Maybe if the real estate agent can picture our past we can arrive there like some twisted Wizard of Oz.

I seem to have misplaced my ruby slippers though… 

We leave the room, the bunk bed feeling a bit smaller than it used to. I had been here in recent years, but it seems to have shrunken alongside my Grandfather while I have been away. 

The agent peeks her head into the last bedroom. The mattress is covered in more boxes of my Grandparents’ clothes and stacks of old board games we used to play. 

“This was my Uncle’s room,” I explain. Again, not sure why I feel the need to share that information. 

She nods and heads down to the bathroom I just came from. The Lace Curtains that frame the window at the end of the hall catch my eye. The Curtains my sister and I would pretend were our wedding veils when we were five. They look the same, even after so many weddings…

The agent exits the bathroom, blocking my view of the matrimonial lace window-coverings. 

“I can show you the garage if you like,” I offer. 

We go back downstairs, the Steps groaning softly as they support our weight. The muffled sounds of Kenzie still sorting photos fills the silence with the hum of the Furnace. As we open the back door, I look up and see the two Paint-by-Numbers Clown Paintings that have hung at the base of the steps for as long as I can remember. They are the type of paintings you race past as a child, worried they may come to life and pull you into their melancholy world of lead-based face paint and sad balloon animals. They somehow manage to feel a bit more melancholy today, as if they know their shift as Nightwatchmen is rapidly coming to an end after all these years. 

I give them a hesitant nod and step outside, still unconvinced the paintings won’t come to life. The cool breeze and warm sun offer a partial relief from the weight we just left. The bird feeders hang warily from the tree, long empty and vacated. The small paved path leading to the garage dips and weaves its way to the sagging brown shed. A basketball hoop hovers over the peeling siding of the garage, its net long gone. 

The House looks on sadly, Its brown frame with yellow trim looming over what It cannot control. The warped glass of age distorting its vision like tears. 

The sky is so blue. We have that in common today. 

I open the door to the garage, the tired wood scraping the exhausted asphalt. The smell of old wood swells and envelopes us. Bags of my Grandparents’ duck decoys line the walls, a collection that has grown over decades of hunting. Ice fishing poles and antiquated tools long retired are scattered in the far corners of the room. A rusted ladder remains chained to the wall. My Grandfathers’ high school football along with his old softball gloves, lie in a pile at the center of the floor next to an old wooden toboggan. I walk over and pick up the football. 

I squeeze the leather, as if clinging to the discarded cells that remain affixed to its surface will bring the Grandpa I remember back. The Grandpa that wasn’t fading away with each passing day. 

I close my eyes as I inhale deeply. A breeze blows outside. A dog barks in the distance. The soft click click click of wheels turning mixes with an inadvertent tinkle of a bell.

Realizing the agent must be waiting on me, I open my eyes to find that I stand alone in the garage. The wood no longer sags, the cracks in the door seemingly repaired. 

The click click click grows louder. 

A new wooden toboggan hangs on the wall alongside a shiny metal ladder that has been chained to it. 

As I move to leave, the shed door bursts open. Its door swings effortlessly above the ground, wood and asphalt not yet meeting. 

The click click click fills the room as a little girl with short blonde hair runs in and leans her bike against the wall next to a small bag of duck decoys. She runs out, not noticing me. 

I follow her, up the smooth paved path, birds flitting by to get a spot on one of the overflowing bird-feeders. 

The little girl pulls open the back-door, its wood lightly rubbing against the top step as she does so. She barrels past a single clown painting that hangs on the wall, the various 2s and 4s barely visible from underneath the fresh paint. She throws her light jacket onto the coat rack. A man’s jacket already hangs facing the door, as if waiting for her return.

Her mom stands at a mirror by the door, hastily smoothing her thin black hair with a wiry brush as she talks on the phone, its chord barely hanging on from two rooms over. 

The woman lowers the phone from her ear as she yells something inaudible to the girl rushing by. She takes one last look before walking away from the mirror, the phone chord breathing a sigh of relief with each step.

I follow behind, walking through the dining room, past a small couch that sits next to the furnace. 

A grandfather clock rattles its chains from the next room over as it announces each intruder. 

The little girl giggles as she runs into the living room, hops over her brother who is playing marbles on the floor, and jumps onto the couch, where her father lies. Her father jumps up to greet her as her mom enters and takes a seat. 

I stare on as my Mom grins.

The image blurs. All is quiet except for the hum of the Furnace and the distant sounds of photos being sorted.

NOT LIKE THE OTHERS

The uneasiness has not yet disappeared, and I am not sure that it ever will… 

Each check-up, swollen lymph-node, or random bruise jolts my nervous system into high-alert. As I get farther away from my transplant date, submerging myself even deeper into “Society,” each doctor’s visit continues to rip open the scars of uncertainty. The walls of security I have been attempting to lay brick-by-brick  for the past two years crumbles in increasing speed as I get closer and closer to the examination table. The mortar was never quite as sturdy after diagnosis. 

Half-way through the hour-long drive to my appointment, my synapses fire and illuminate the memories of prior appointments. We have made this drive before. However, the rocking of the car as it hits the various cracks in the road now leaves us worried about tire alignment rather than the alignment of my mouth with a throw-up bag.

I am able to stave off the beasts of negativity that paw at the edges of my confidence until we reach the Cancer Center. I will be ok. As my Mom and I get out of the car, I wonder if the parking attendants can tell which one of us is the patient. It was obvious before. My back hunched at the weight of my bare head. The raised outline of my exposed chest catheters. I was not like the Others.

Where I once shuffled across the Cancer Center’s entryway, I now take long strides. The pants that were once baggy now cling to my hips and thighs. The ghostly voice of my previous eating disorder softly calls in my ear, attempting to fill me with premature guilt for the progress we’ve made. The nagging voice is drowned out as I walk past the wall of people in the car pick-up line.

I stand tall above the countless wheelchairs that offer assistance to more than half of those waiting for whichever chariot will whisk them away from more bad news or scan orders. For a moment I see figments of my previous self seated amongst the group. Frail, broken, wanting to go home. 

I clutch my Independence a bit tighter as I walk through the familiar doors, no longer the only one wearing a mask for my protection. No longer wrapped in jackets and beanies in 80-degree weather. I am not like the Others.  

As I check into the BMT clinic, the Receptionist who has greeted us warmly for the past three years furrows her brow and asks for my name, unable to recognize me from behind the mask and full head of hair. My stomach sinks a little. I know the mask doesn’t help, but I no longer feel like a “regular” at the place that served as a second home for the better part of two years.

The clinic has seemingly moved on to more pressing patients, but I am not sure if I have moved on with it. Memories linger in every corner of this room like ghosts. I recall where I sat for my first BMT appointment. Where I staved off nausea before my second infusion. Where I waited to be rebuilt in more ways than one.

My Mom and I take a seat, noting how much quieter it is due to Covid protocols. I look to the check-in desk and scan the room, attempting to assess how many patients are ahead of me. Old habits. I don’t recognize any of the check-in personnel, another reminder that the world has continued on. When my time comes, I offer my wrist to the New Face at Desk 2, struggling to hold up the crumbling facade of “OK-ness.”  

As I am banded by the Bouncer of Blood, the final bricks from what I had been building (for the umpteenth time) over the past 6 months evaporate. My poker face barely holding on, saved by the fact that now only my eyes need to sell my fake sense of security. I breathe a bit harder through my mask and allow the lens fog to cover up what my soul cannot. 

Now, only a bracelet gives me away as the patient. I play with it on my wrist, and it reminds me that I am 28-yrs-old. I remember when it read “25”… and then “26”… and then “27.” Most people have old movie tickets in their keepsake boxes as reminders of years past. I have various medical memorabilia.

As my name is called from the Nurse’s Station, I stand up and walk through the doors that have transported me into immense fear, joy, and confusion over the past few years. It is lost on me that I am not light-headed from the sudden shift in altitude. Today I have forgotten where I came from. 

The lead Nurse, a trainee when I was a “regular,” asks how I have been. A question that is just vague enough to hide whether or not they do remember me. “Doing well!,” I say, perhaps a bit too eagerly, as if maybe we’ll go get a coffee to catch up after we get through the blood formalities. 

They motion to the scale. I take off my shoes, jacket, and empty my pockets, not wanting to give that semi-dormant voice in my head even more impetus to awake. I look anywhere but the number, hoping the Nurse doesn’t announce how much weight I have or haven’t gained since our last visit. The scale beeps, content with the amount of space I take up on this Earth. Numbers are jotted down, nothing is said. We are safe for now, the voice can continue to sleep. 

I offer my index finger as the Nurse wraps the blood pressure cuff around my arm. I still know my way around a vitals collection…My fingers gently pull my mask below my chin as I offer the underside of my tongue for the thermometer. We’ve come a long way since my first time, when I pulled my mask over my eyes to allow the Nurse access to my mouth…(We laughed.)

We walk over to the collection room where the Nurse will harvest my blood. I hop in the chair, quickly unzipping my port shirt and wiping the Emla cream from my chest. The skin tingles from where the numbing cream sat all morning.

I make small talk, hesitating before I ask how the Nurse has been doing. The New York Times has filled in many of the blanks as to how the medical industry has been lately…The Nurse cracks open the alcohol applicator and the familiar smell punctures my mask. My heart starts beating a bit faster as the scratchy sponge trails the cold liquid over my port site. 

After a few moments pass, and the alcohol has evaporated from my skin, the Nurse begins the count down from three before plunging the syringe into my port. I exhale as I feel nothing, the nerves fast asleep. I try to relax, something one of my earlier nurses explained is important for easy blood return. 

No return. The Nurse begins pumping the syringe in hopes of breaking through the hold, the catheter in my neck quivering with each injection of hope and withdrawal of disappointment. Still nothing. I turn my head to the side. Pro tip from a different Nurse two years back. 

“When was the last time this was flushed?,” I am asked. 

“Uhh, a month or so ago?” (Give or take two months…)

I am prepared to stand up, a suggestion from a third Nurse I had early on in my treatment, but we finally get a return. I try to act cool, breathing away the flurry of dizziness that was starting to cull around the periphery of my brain. Hello Anxiety, my old friend. 

“You doing ok?”

The question that always left me with more anxiety. My brain ignites for one final spin, the edges of the room darkening a bit. 

Shit. I inhale. The spinning slows enough for me to nod my head and give a shallow, “Uh huh!” 

After three years you’d think this would be easy. 

The Nurse seals me up and sends me back through the doors to the waiting room. My Mom looks up as I approach, asking if everything went alright. We’ve had faster blood draws in previous visits…

“Just a sticky port.” 

My Mom suggests that maybe I should get it flushed more than once every three months.

“Yeah.” 

I know I won’t. 

I brought my backpack with me to do work, but I look around instead, observing those who came before and after me. 

The familiar muffled sounds of HGTV take off the slight edge of fatigue and anxiety that fills the room. The lady two chairs over holds her husband’s banded hand tightly, as if it is all she has and is about to lose.

The man across the room nods off, his nervous wife looks around uneasily. They are called into the conference room reserved for social worker visits. The room where I was asked if I had a last will and testament and encouraged to prepare one. I am not like the Others. 

Phones ring, the office’s holiday tree is now adorned with shamrocks for the month of March, life moves on. We are called back and led to examination room 2b. The room where my stem cell treatment all began. Only my Mom is with me this time. They don’t need to drag in extra chairs from the hallway for the rest of my family. 

But there I sit, waiting for the Nurse to come in and rattle off the list of 10 pills I used to take but have yet to say that I no longer do. I’m not sure why I don’t correct them. Maybe it’s fear that the minute they are removed from my chart is when they’ll be added back on. Maybe I cling to my identity as “Patient” and all that comes with this title. Maybe I forgot what it means to not have a pharmacy as a nightstand.

My Mom and I fill the time with crossword puzzles. 

“1970 Crosby, Stills, Nash, and Young album?” 

Mom fills in the blanks effortlessly. 

“Huh,” I say curiously as I look at the answer.

Before I can admire the poetry of the moment too much, the handle jiggles a millisecond before the door opens, disrupting the vacuum of calm anticipation that had fallen thickly over the room. 

A peppy Nurse I’ve never met before (we’ll call her Joy), walks in and introduces herself. This is beginning to feel like the fourth season of a spin-off series.

Joy asks how I’ve been and eagerly takes notes. The exchange is much shorter than it used to be. I no longer have chemo-induced hives or insomnia to inquire about. I merely work long hours and eat a lot of ice cream. My issues read like a headline for US Weekly rather than a CVS receipt. I am not like the Others. 

Joy nods sympathetically as I talk about work. I try to keep the venting short, again thinking back to the New York Times articles. She collects her notes and says the doctor will be right in. The thick blanket of anticipation settles back over the room with the sharp click of the door handle behind Joy. 

“Eggs for fertilization…three letters…” my Mom reads aloud, shifting the focus away from the impending results and back to the black and white checkerboard. 

“Ova,” I offer. My mom nods as she fills in the blanks.  

“Speaking of, has the fertility clinic sent this year’s bill for your egg storage?,” my Mom asks.

“Not yet.”

I am not like the Others. 

Each minute that passes by waiting for the Doctor to arrive sinks my stomach a little further as if it was an internal game of Battleship and my immune system has already taken out my freighter. We have been here before. There’s a certain assumption that you won’t be seen on time. The ill outnumber the saviors. 

But after a certain threshold of tardiness, your prognosis starts dipping. Once a delay in visitation has been caused by your failing immune system, you will always assume this is the case, even if it is because of someone else’s failing immune system… or merely bad traffic. 

We are connected in more ways than we often realize, us Cancer Patients. Connected through the unspoken understanding of what it’s like to look at ourselves in the mirror each morning, to stare into our sunken eyes and pale scalps. Connected through the communal assumption that we all have contributed way too many medical ID bracelets to various trash heaps and memory boxes. Connected by the fact that one medical hiccup in our daisy-chain of neighboring appointments ultimately triggers a prolonged day for the next patient.  And so the dominos tip.

Yet, for an experience that binds us beyond words, we still often feel so alone. We are not like the Others. 

Those who love us profoundly do not completely understand (unless they have unfortunately been handed a diagnosis themselves).  They see, they witness, they pray. They get close. But they fortunately do not share the full gamut of our mental wear. They have their own mental hills to climb, hills that presented themselves when we were inducted into this warped club. Yet, I’m not sure if they can fully understand the hesitancy in making plans we share or how even in moving forward, we continue to look over our shoulder, ensuring the Beast remains dormant for another day. We are simultaneously running from our diagnoses and relapses while chasing a time that seems to have picked up the pace from when we were last “Normal.” When mortality was not thrown in our faces.

Our ignorant lens is shattered in diagnosis. We are made painfully aware of the fragile glass box we had existed in up until that defining moment of our lives. The light no longer bends around what we seem to only discover in old age and tragedy, and instead rests squarely upon the facade of fragility. We now more clearly see the thin line upon which we all delicately balance. 

While we attempt come to terms with this fractured lens, we are forged in chemical fire in an effort to fuse what was shattered. And if we are lucky, we can one day inhale deeply, our lungs filling with the air of the shifting seasons as our futures broaden beyond the next few hours, days, weeks…

We are not like the Others. 

I now understand what it means for the young to feel immortal, since I no longer do. 

Remission has left me split between two selves. The Patient who did the heavy lifting to get us to this point, whose physical suffering has ended and should celebrate. And the Survivor, who has been handed a second chance and is unsure of what to do with it.  The Patient had a clear directive, to Survive. The Survivor must develop their own. Once you fight for one more breath, what do you fight for next? 

“Dinglehopper?,” my Mom reads aloud. 

“Fork.” 

With each appointment, a jagged fragment of me wants to be told that I have relapsed. I can’t shatter from what I desire.

I no longer trust my body, so my mind invites the tragedy before someone else can. Fool me once…

Yet, the much larger part of myself fears what the odds say I may face again. A mere inflection or trailing inquiry about my lymph nodes and night sweats has me gripping the armrest of the examination table tighter than I would normally. (I feel Unremarkable. Right? This is what Unremarkable feels like. I hope this is what Unremarkable feels like.) 

We’ve been remarkable for so long that we’ve forgotten what it means to feel “normal.”

There is a silent resilience to being in remission that places you in the grey. You are expected to move on, as if you are a butterfly that needs to prove there was some transitory reason you were one of the lucky few chosen for this fight. As if you have two pairs of wings to pick from during your cancer treatment: the pair you discover after awaking from a deep sleep and the pair you are only awarded if you never wake up. 

I spread my newfound “wings,” only to realize that I never learned how to fly. I tell myself that I cannot complain, since I have gone through things worth complaining about. So I remain in the shadows, observing and noting. Trying to subdue the voices of frustration for being where I am, knowing that where I am is a gift.

“Beloved fairytale by J.M. Barrie?,” my Mom offers. 

“Peter Pan?” 

The handle of the door jiggles slightly before the door opens to begin my Doctor’s visit.

I inhale deeply as my Mom and I look at each other. She squeezes my hand. 

I am not like the Others. 

Rapunzel, Rapunzel

It is interesting how the significance of hair changes throughout our lives.

At first it represents new beginnings. You are born into this world and It stares on in wonder at the fuzz gracing your tiny head. The baby-fine fibers an invitation to nuzzle and smell - each breath filling spectator’s lungs with the seemingly infinite possibilities, fears, and trepidations a baby carries. 

As a cancer patient, a bald head doesn’t garner quite the same wonder. You are thrust into a parallel-existence in which the patches of fuzz scattered across your globe now speak more about your Cancer’s potential than your own. The nonexistent fibers now an invitation for others to cling tightly - the uncertainty of time now painfully apparent to all in your orbit. Each breath filling spectator’s lungs with fears, trepidations, and the possibilities no one wants to acknowledge.

Your potential is no longer rooted in education, careers, and relationships but instead survival rates and clinical trial admittance. You are forced to sink lower into yourself than you have had to before, to turn over the rocks within your core and hope for something to make sense. You wait for your hair to grow back between infusions, an in-between existence in which you are still a cancer patient but look the part a bit less - the hair you once knew now growing back wild and unruly like it did when you were a child.

I often think about what it would be like if I could go back and visit with my younger self. Each version of my existence staring at the other with our feral curls fraying at the edges of our faces. One of our heads reminding our Mother of her own adolescence. The other’s reminding her of our fragility. 

My younger self would stare at me, confused as to why we didn’t grow up looking like Elizabeth Berkley as we had imagined. I would stare back, wishing my younger self didn’t have to grow up. I would squeeze her and inhale deeply, breathing in the neon smell of Kindergarten finger paints and watermelon L’Oreal Kids, thinking about the countless pony tails, flatirons, and bobs that hair would find itself in over the years, and how eventually it would all be gone. “You’re going to do great,” I would whisper in her ear, not sure if I entirely believe it myself. 

As a child, hair-growth marks a transition - our personalities forming as quickly as our frayed mullets. Our hair begins to reveal more behind the curtain of minivans and sedans that drop us off and whisk us away each day. We begin to identify the kids with the perfectly French-braided pigtails as those with the fully-stocked lunches - a good indication their family has a robust pantry as well as a trampoline. 

We can also identify the kids whose knotted hair extends from their scalp in every direction, unwilling to be contained much like the neon jelly that streaks across their face. These are the ones with the $1 fruit pies and margarine sandwiches no one wants to trade on the lunchroom floor. (A.K.A. Yours Truly.)

I would hold onto my younger self as I knelt on the playground, attempting to keep her from the world of comparison that was waiting for her. From being told she couldn’t be Rapunzel because of course only those with long blonde braids could be Rapunzel. From learning how to make herself smaller. 

I would guide her to the swing set she always liked, where she would feel like she was flying as she closed her eyes and launched into the air. 

I would give her a push, and watch as her tangled tresses flew in every direction. “Keep flying,” I would say under my breath, a silent prayer that I knew would be futile. “Keep saying you want to be a horse when you grow up,” I would encourage. After all, I often find myself wishing I was a Labrador these days. Curious how it takes adults a bit of unlearning to realize that maybe our younger selves were onto something.

My younger self would giggle as her swing came back down from having completed its trajectory. Any pain she’d experienced to date not piercing enough to be more than a distant memory.

I would wish I could tell her that the only time we would look like the Crypt Keeper in our life would be when our older sister decided she could save our family money on a summer haircut and removed our bangs entirely. I would wish I could tell my younger self that the only clumps of hair that would fall out were by the hand of our other sister after we had accidentally painted the nails/entire hand of her Barbie with Mom’s red nail polish because it’s a Summer color and we were in fact in Summer…

I would wish the only thing we had to watch swirl down the drain was the acrylic paint from 5th grade art camp and not the clumps of hair that could no longer withstand a mere brush of my hand across the scalp. Even if L’Oreal Kids was still an option I wouldn’t dare open my eyes mid-lather, afraid of what greeted me. 

The wooded scratch of her small velcro-shoes as they raked the mulch below the swings would  awaken me from perturbed musings. My younger self ready to move on, and I not ready for her to. I’d invite her to play House, an ironic attempt at slowing her reach for adulthood. I’d offer to be the family Labrador and she could be whatever she wanted, even Rapunzel. Even a horse. 

She would acquiesce, but would spend an inordinate amount of time doing her hair and makeup in a nonexistent mirror. I would howl in distaste as I recognized her understanding that, at a certain point, hair becomes our version of iridescent plumage and the first steps of the courting dance we practice in hopes of finding a partner. 

Hours spent flattening our curls or curling our flat hair. Again, painfully aware of what we don’t have and using heat-wand sorcery to transform ourselves. As we age, we begin to wield the power to change our hair color and length. We can now be Rapunzel. We may now let down our hair in the hopes of someone climbing up to join us in our castle. 

I would block the doorway of the old wooden house we had spent countless recess-hours inside, spinning our own tales from the foundations of those that came before us. I would look out onto the playground, long abandoned from my memory. I would let out one final yowl, a warning to all who dare enter to take us from this bubble. As I turned back, I would discover that while I was fixated on what lay ahead for my younger self, she had grown up with the dreams I had carried for years. 

I would watch as she pantomimed straightening her long hair and applying mascara to her long eyelashes. She would toss her head back and smile in the nonexistent mirror, making sure she didn’t look too fake or too normal, hovering on that razor-thin line of laid-back and beautiful. Do I tell her she’ll eventually be tipping her head back into the bathroom sink as her partner takes his clippers to the meager amounts of hair Chemo hasn’t yet claimed?

Maybe not right now.

I would watch as she ran her fingers through her hair one final time, a slight frown forming from how the thin strands tangle around her fingers. “Yes, it will always feel like spiderwebs and used floss my dear,” I bark from the doorway, still attempting to play my part in this quickly crumbling game of Make Believe. 

The picture fractures, if only for a second. In its place flashes the image of me sitting in the middle of my hospital room, alone. I run my hands through my hair one final time as I wait for my head to once again be shaved, this time by a complete stranger.  

The picture corrects and I am once again staring at myself as she frowns slightly in the metaphorical mirror. I would walk over to her and lean down to nuzzle once more. The smell of flowers lingers where the scent of watermelons used to rest. I close my eyes as I begin to wrangle our hair into the single braid we had always wanted.

If only I could tell myself to not get too attached - to forget that we were trying to be Rapunzel. 

As I weave the thin strands into a singular rope, the reel of my various hairstyles comes flooding in from the recesses of my mind. The frizzy bob that wouldn’t dare be contained. The equally frizzy shoulder length cut that rested on my under-sized button-down in that yearbook photo that left many wondering if I was learning Algebra or if I could do their taxes. The tailored curls that cascaded from my graduation cap. The peppy ponytail, only slightly disheveled after finishing a half-marathon. The reel cuts out. 

I am standing alone in the old wooden house. It feels smaller than it did. 

I realize my hair represents a lot more to me than I thought. The weight it bares and meaning it holds has shifted, like it has done my entire life. I am just now awake enough to appreciate the transformation.

I always strove to be an “Outlier.” For years I pushed myself to stand out in some twisted sense of superiority. I raced for the top of whatever mountain was in front of me, ready to claim my seat and the crisp air that was sure to be waiting at the top.

Then I actually became an Outlier. My acknowledged courage not gained, as I had once imagined, by attacking some corporate hierarchy with supreme grace and tenacity. Instead, it was earned by waiting quietly in seats until my name was called so I could hold up my flimsy wrist for a Nurse to confirm I was in fact who I was volunteering to be.

Perhaps me spending an inordinate amount of time pondering this is an attempt to find what makes me unique as I fade back into “normal” life. I do that a lot lately, spend an inordinate amount of time ruminating about where I am and how I’ve gotten here. (Pro tip: If you say you’re “ruminating” it doesn’t sound as narcissistic…) I often think about the ripples I radiate into the world. Those in front of me, on a horizon I can’t quite make out - and those behind me, taking on a new light from this retrospective vantage point.

Perhaps all of this started two weeks ago, when I cut off the shoulder length curls I had been growing out for the past two years. Or perhaps I was thrown into a spiral of introspection (it doesn’t take much to do that these days) when I was asked if I was nervous to cut all of my hair off this time.

At first I wondered why someone would ask me that. Was this a question most people are asked if they chop off their thin mane? I never had a say in the hair-loss matter before so I must admit that my litmus for people’s reactions to one drastically changing hairstyles is a bit skewed.

Pre-diagnosis, a haircut represented a slight change in my appearance that garnered a quick, “Did you get a haircut? It looks nice!,” before we all went about our days. Afterwards, it seems to represent much more.

I have been fortunate enough to work with the same Hairstylist for five years now. From day one of stepping into his salon, Paul* worked to thicken my baby-fine hair and has since witnessed the two years of growth after the tresses he had been tenderly maintaining were wiped clean.

Paul was the one who gave me the last haircut before Treatment started. 

My Mom was with me for that visit. It was the first time she had been with me for a haircut since I was probably 14. I had been falling in slow motion since my doctor told me that I had Lymphoma, my life feeling as if it was flying away from me in every direction as I sank downwards. 

There I fell, grasping for the various relics of my Life as I fell past. I clung to whatever I could, reaching for some sense of control over everything. I spent so much of my youth planning, plotting, and striving, and here I was, tumbling, scrambling, and realizing. Realizing I didn’t have as much control over my life as I thought. Maybe I couldn’t be Rapunzel. 

How easy it is to be so naive when your head is in the ground. Naive to your Privilege and Fragility. Naive to how the World spins on with or without you. The Sun rises. The Sun sets. Rinse. Repeat.

I had reached out to Paul a few days after I had received my diagnosis to see if he could fit me in last minute. I needed to get to my hair before the drugs could. Fortunately, Paul was gracious enough to squeeze me in.

A weight bore down on my chest as we drove to the salon that day. I had driven there countless times before. This time however, I hoped the road wouldn’t end. I can only imagine my Mom felt the same way, out of a profound desire that the circumstances for our Mother-Daughter salon-outing were different. I’ve never actually asked her how she felt that day. So Mom, if you are reading this, thank you for going with me to that haircut. I am so sorry you had to. 

I had contemplated trying a short haircut in recent years, never bold enough to move forward. (What would someone think?) Instead, I kept my hair long, even though my hair tends to have a mind of its own once it goes past my chin. Thin tentacles intertwining like an air plant, searching for nutrients that my head can’t seem to provide. However, a pixie cut that day represented a diagnosis rather than a decision to finally be bold.

I was not a badass. I was sick. 

My palms were sweaty as we pulled up to the salon, not sure if it was another fever spike or nerves for what was about to come. I stopped my Mom as we rounded the corner of the old brick-building. I wanted a picture, a picture of “Before,” feeling like the “After” this haircut signified was more than just an adventurous phase in my life.

We took the photo, me smiling as if it was any other day. Deep down, my heart was pounding. Not because I was afraid of what the scissors were about to do. I never had really found my identity in my hair. (If the air plant analogy didn’t paint enough of a picture as to why this might be the case, I can’t help you…)

My heart was pounding from what I was simultaneously running away from and sprinting towards. To cut my hair was an acknowledgement of my vulnerability. 

Paul greeted us warmly with a hug. I felt so much smaller than I used to in that embrace. I felt like I had regressed back into my 8-yr-old self - my Mom taking me to Fantastic Sams before the school year started for my typical bob haircut. (Nothing showed off the Dr. Seuss suspenders quite like a chin length bob…Mini-Aubrey, you saucy minx.) 

I felt like a baby bird, about to be thrust from a nest into a profound darkness that lay in front of me, waiting to engulf me with its various procedures and infusions - a darkness punctuated with symptoms that I could not anticipate and prognoses that I didn’t expect to come. I found my voice catch in my throat as I stayed in the embrace for a few seconds. My eyes burned as I fought back tears. 

If I cut off my hair, who will be able to visit me in my castle? 

I excused myself to the bathroom and ran the water as I stared at myself in the mirror. I took a deep breath and listened to my Mom thank Paul for squeezing me into his schedule today. I couldn’t catch every word, as the blood pounding in my ears didn’t quite get the memo about the principles of eavesdropping. I caught bits of what was being said, “Sorry,” (Was that Paul or my Mom? Dammit Mom we gotta stop saying “sorry” so much…) “…pull an Annie Lennox” (“Buh buh buh…buh buh on Broken Glaaaaaa-aaa-aaaasss…” Dang that’s a catchy song. Wait, what about Annie Lennox?) Thank Goodness my Mom is buying all this time for me to ponder Annie Lennox’s discography in this bathroom right now. Pull it together, Aubrey…If you rub your eyes like they itch maybe we can brush the redness off as allergies. 

45 minutes later, I emerged from the bathroom… It was only about 5 minutes but we covered a lot of ground internally in those few minutes. When I emerged, it was as if my Mom knew all that had transpired behind the bathroom door. She quickly summarized what her and Paul had discussed…Maybe we don’t cut all of the hair off today. 

I exhaled, a sigh of relief. Baby steps. I could push off the inevitable a bit longer. I didn’t need to beat it to the finish line, I just needed to stay in front of it a bit. So there I was with my Mom, once again getting a bob. (Nothing shows off a backless gown quite like a chin length bob…Mid-20s Aubrey, you saucy minx.) 

And here I am two weekends ago, asking for the Annie Lennox. This time I did not have to give myself a pep-talk in the bathroom mirror beforehand. I walked in alone, spoke without having to hold back tears, and walked out as someone who just got a new haircut.

Except this haircut did not come with fistfuls of hair releasing in the shower as follicles jumped ship from drugs circulating underneath the surface of my scalp. No, this haircut came with me continuing forward, spinning onwards with the Earth like the hair that found its way down the drain so many months ago. The Sun rises. The Sun sets. Lather. Rinse. Repeat.

I stand alone in the old wooden house, a slight squeak from the swing set beckoning from across the playground. I stare at myself in the nonexistent mirror, taking in my short hair and the neon purple jelly streak that adorns my cheek. I wipe it off and tousle my hair encouraging it to reach skyward, like it had done for so many years. I no longer want to be Rapunzel. I’ll tell everyone to start taking the stairs. 

*Names were changed to protect privacy

I AM NOT A BLOGGER…

Well now I am. Though I’m not sure one post garners the title of “Blogger.” Prior to this entry, I questioned why I would ever start a blog. As I would scroll through page after page of someone describing how their Great Aunt’s 76th birthday party made them realize the secret to their family’s baked ziti was ‘love’ (In all fairness, it was really good baked ziti…), I would wonder what I would even write about if I started one. 

This contemplation would be short-lived since I would 1) be running short on time for dinner (largely because I had spent a good portion of my evening scrolling through the saucy details of Great Aunt Gertrude’s 76th birthday party) and 2) I would quickly remind myself that no one cares about what I think. 

Hell, even writing this I question whether or not this blog makes sense.

Please note, I didn’t say I questioned whether or not people cared about what I think. I know they don’t. So I do appreciate your continued attention or even just the nicety of scrolling. But hey, maybe you are hoping that I too have some insight into the secret of my family’s Hamburger Helper recipe. In which case, please forgive my assumption that you don’t give a shit and let me divulge the secret that our recipe does in fact come from a box.

Bloggers, they’re just like us!…

Also, now is when I should note that I am in no way sponsored by Hamburger Helper. Just wanted to clear the air in case something on my Squarespace site made you think otherwise. (Full disclosure, I am not sponsored by Squarespace either.)

However, one of the larger barriers-to-entry I faced in starting a blog was the self-inflicted feeling that I was an Imposter. Now, this wasn’t a new flair-up that arose from some inane fear that the regales of my Great Aunt’s toe amputation might not hold a candle to Great Aunt Gertrude’s Roaring 20’s themed bash. (Hindsight, perhaps we all should have been a bit more wary of 2020 based on the last round of 20s we went through…) Or that the big reveal of Helman’s (not a sponsor) rather than ‘love’ as the secret ingredient to my family’s Tater Tot Hot Dish might not capture your love and admiration quite like bloggers before me have.

No, for as long as I can remember I’ve felt like an Imposter. Running Cross Country in high school, I felt like an Imposter. I was not a runner, even though I was running… 

I have been in animation production for four years and still feel like an Imposter, even though I have been producing animation…

Going through Cancer treatment I felt like an Imposter. Even though I was in fact going through chemo, countless surgeries, and the existential crisis that often comes with such a diagnosis…

And maybe now is when I should tell you I was diagnosed with Hodgkin’s Lymphoma in 2018…Probably should have led with that. Like I said, I am not a blogger…

At that point, I felt like an Imposter for trying to blend into the Public while everything about my outward appearance betrayed me. Perhaps I can’t even call myself an Imposter for this period of time, or at least, not a good one. I tried with all my might to look like the “Others” whose bodies weren’t waging some twisted cellular civil war. To avoid the nervous stares and the offhanded compliment on my “chic” haircut, a slight frown weighing down the corners of the lips that offered the olive branch of normalcy. The downward curve of their mouth always at enough of an angle to let me know that it was no secret as to why my hair was so “bold” or why I had a raised disk protruding from my right chest. No, it was never that cold in there and I was never that happy to see anyone…

I was naive to think that I would feel like I belonged once I “completed” treatment. (Though I am not sure I will ever feel like it is fully “completed.“ “Completed” implies finality. I am forever changed.) No. In fact, Remission has presented the biggest Imposter of them all.

Now when I walk through the halls of the Cancer Center, knowing it will (hopefully) be a quick 4-hour day (three of which will be waiting and watching HGTV), and the worst my Doctor will most likely say to me is that I work too much (Don’t we all?), I notice my steps quickening as I try to get out of the way of those who have far longer days ahead of them. I was there once. I know those days of not knowing when or if you’ll get to go home.

Those days of staring at the wall, trying not to think about the fire-of-a-thousand-Taco-Bells (not a sponsor), that is rising up in my chest from the piece of toast I was frisky enough to try that morning. (Won’t make THAT mistake again…Spoiler, we did.) Those afternoons of being thrown into a quick lung-biopsy because they have an opening and you have an “abnormal” spot in your chest. (How convenient…I have to wait two nerve-wracking months to find out if I have Cancer but now that I’ve been invited to the party you can throw me into a quick surgery? Do the schedulers know you play it this fast and loose down here?) 

Now at my check-ups, I find myself tugging at my medical bracelet as if to remind myself that yes, you do belong here. Not that I want to belong there. I don’t want to contemplate if I will ever feel secure again. But once again, the Imposter starts creeping out from the shallow recesses of my mind. My hair now betraying me the other way. Covering up the scars along my neck from where they took pieces of me to determine if I was another statistic. I am no longer the size of an 8th grader. My pants are no longer baggy, my eyes no longer sunken. 

Now, “Survivor’s Guilt” instead of indigestion rises up in my chest, an acknowledgement that I am one of the “lucky ones.” Yes, the lucky ones whose battles with Cancer aren’t too tragic. Our family’s lives weren’t turned upside down too much as we fought for another hour, a different day, one more year. One of the lucky ones with the strength to stand each morning and face the mirror, examining the body that bears the scars and stories of our fragility, daily reminders that all of this is fleeting. One of the lucky ones who was allowed to ring the bell, signifying infusions were over but confusion was just beginning. (Thanks, Chemo-Brain…)

Everyone says there is a “Before” to Cancer and an “After.“ If it could be as simple as a marking on a timeline. No one really talks about how the “After” looks. It’s not like those sexy reveals on HGTV, where now I have a wheel for a foot (asking for a Great Aunt…), shampoo commercial hair, and am just generally crushing my late 20s. I had the notion that Cancer was some deranged cocoon that not only changed my cells but also my outlook on life. Once done with Treatment, I would be thrust into the world anew, ready to take it on with such profound beauty and grace that would leave me serene and whole. Like I was a damn butterfly. (With a robot foot, shampoo-commercial hair, and a sick Insta following…)

Instead, I entered into the “After” ill-prepared for the mental chaos that was and continues to lap at the shores of my brain. I feel like a snow globe that has been shaken up and now I wait for the flurries to land so I may clearly see my path forward. But as the days go by, and I hit various post-stem-cell-transplant milestones, I am beginning to wonder if the flurries will ever settle. The world has continued on. I am not serene and whole. I am not a damn butterfly. 

Instead, I feel like a mental Twister living inside someone else’s body and there’s no Bill Paxton (R.I.P.) to stop it in its tracks. (He stops twisters in that movie right?) The shell of me looks the same, (I mean seriously…Couldn’t you have altered my cells to at least have better hair? I admit, I was greedy with the robot foot. The hair was a fair ask.) but my spirit has shifted. The caterpillar fell asleep and out came a bird. 

Cancer has a way of bending light and revealing the jagged edges of yourself that you thought facing mortality would soften. In bending this light, Cancer has simultaneously blurred the vision of where I see my path in life. The astigmatism of my sense of self has worsened. My understanding of time has shifted. Every passing moment, precious and to be savored. Every passing moment, fleeting and to be attacked with vigor…slowly building vigor. 

I had an identity, a career-path, and an immense confidence in my health before I was diagnosed. I seem to have misplaced them along the way.

Cancer is a great Equalizer, and does not have the patience for perfection or plans. You can fight it all you want, but Cancer will throw you curve ball after curve ball as if to remind you that you are not in control of any of this. 

Mornings spent taming your frizzy mane into perfect shoulder-length waves? Ehh, let's just 86 the hair altogether and see how that plays out. 

Rapidly climbing the career ladder towards that next promotion? How about we take a bit of a medical leave since you can’t even remember if you’ve showered today. 

Busting your ass before your 12-hr workday so you can still pretend like you have abs? Why don’t we inflame your joints and hand you a shiny new whip of a walker to tool around with. 

And then, once you are given the “all-clear,” planning is expected to resume…Once again, the light bends and the old trusty framework between which I thrived before now looks a bit more like a cage. A cage that is as terrifying inside as it is outside. I do not want to be contained as the second-hand on my clock increases in speed with each passing second. I do not wish to leave, because I know not what lies beyond the metal bars. 

I know how to be sick. I don’t remember how to live. 

Where before I was content remaining quiet, working to fill my cage with baubles and brilliant things, my voice now burns deep within my chest. (And it isn’t the Taco Bell (not a Sponsor) fire…)

Before I thought I knew who I was and didn’t have much to say. Now I feel like I am staring at a stranger in the mirror, a stranger who has been staring back at me from day one, through thick and thin. A stranger I have spent years afraid of what people think of her. A stranger I kept quiet for fear she would tarnish our meticulously manicured image. A stranger who has been waiting to speak. 

Cancer has presented me with a lot of time in my head (and Benedryl-hallucinations…). And I have realized that through my stem-cell transplant, the slash-and-burn equivalent to a cure, the foundations for who I truly am were forged.

I’ve been broken by chemicals I can’t pronounce, and rebuilt by strength I didn’t know I had.

As I step through the metal bars, away from everything I have strived for throughout my life, I am not sure where I am heading or what I will find out there. Maybe it’ll be clarity. Perhaps peace. I hope it is more of myself. 

I am not sure I will find the notion of “sense” that almost kept me from writing this blog. I don’t think I could ever make sense of going through Treatment. Being a young adult with Cancer comes with a unique set of baggage. At a time of your life when you feel like the world is your oyster, your world is confined to the four walls of a hospital room (and you are told you cannot under any circumstances eat a raw oyster…). When your friends are planning their weddings and futures as parents, you’re planning your next Treatment plan which will most likely leave you infertile. At a time when careers are taking off, you’re left wondering if yours still fits.

But the sadness in all of this is that I am not alone. Roughly 80,000 other young adults (15-39 years old) join me every year, and that number continues to increase. We are a group of people who have hit the jackpot of all “journeys,”* bound together by our joint-appreciation of the scars we bare and the pain we bury. 

I am not the authority on Cancer, though I am a Cancer Patient. Much like I am not a Blogger, though I have somehow managed to start a blog.

But perhaps I will find a purpose in all of this all. Maybe whoever reads this, be it Patient, Caregiver, Friend, or Lost Soul, will find a little more of themselves too. Life hands us all lemons in one way or another. I’ve found they’re a little easier to chew on with someone saying, “Hey, I’ve been there too.”

So here’s to the Imposters (Not to be confused with identity thieves…I am not raising a glass to criminal activity…). Here’s to those who are feeling a bit lost and unsure of where to head next. Here’s to those who have had their snow globes turned upside down and are also waiting for the flurries to land. You’re not alone. Not by a long shot. 

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** Cancer Support Tip: I have yet to meet a fellow Cancer patient who particularly enjoys their Treatments and scars being chalked up to a “journey.” It is also a term that is most often used with young adults, as if it is some right-of-passage trip we are on like Rumspringa. This is not a trip. We will not be birthed into this world anew like some pickled butterfly. Cancer is more like a “dumpster-fire” than a “journey.” 

Can you use that word in a sentence? Why yes, yes I can.

SOLID SUPPORT SENTENCE: “We may not understand this Cancer dumpster-fire you’re in, but we are here for you.” 

IFFY SUPPORT SENTENCE: “It is really amazing how much your Cancer Journey has changed your outlook on life.” 

At least with the dumpster-fire verbiage us patients have the imagery of rising out of the trash-blaze like a badass Phoenix, rather than some dainty butterfly. (No offense butterflies, I know you do a lot of important work and are badass in your own right, but being born from flames as opposed to a long mummified nap just seems cooler.) 

And I get it, Cancer is hard on everyone, not just the patient. So let’s figure out how to navigate the Great Dumpster-Fire together… Thank you for coming to my TEDtalk. (I am also not sponsored by TEDtalk. I have no sponsors…) 

DOCS & glass houses

If you don’t like HGTV, don’t get Cancer. I mean, even if you thoroughly enjoy their programming I would strongly advise you don’t get Cancer. But, if find yourself joining The Club, get your hardhat ready because what I gather from my experiences across four cancer centers in three different states is that they all play HGTV in the waiting room. 

Now, you might get a wily peer who builds up the hutzpah to change the channel, but 90% of the time most of us are too fixated on trying to not throw up to worry about it. So there we sit, in an open room being told how a Rust Enthusiast and an Eraser Entrepreneur fresh out of college can afford a $500,000 demolition. Their enthusiastic “Ahhs” mixed with the inevitable distaste in the primer being used in their bathroom fill the vacuum of silence that falls across the berber carpeting of our holding pen. 

The only reprieve from the demolition sounds droning in the background are the yells from the Check-in Desk for “Johnson…Desk 2!” Everyone’s eyes flick up from whatever they are doing to occupy their brains from realizing they shouldn’t have had the second Saltine in the car to see which unsuspecting victim is Johnson. Ahhh…not who I was thinking. Truthfully, Johnson’s caregiver looks a bit worse for wear than he does so kudos to Johnson…Keeping it TOIGHT.

But as we sit, waiting to get called forward to receive another week of flimsy security or orders for more scans, HGTV shines down on us. It serves as a reminder of how the other half lives. A reminder of how one day we too can join them, if our treatment plans don’t fail us and our medical bills aren’t too high of an impediment for a mortgage. 

When my Cancer treatment became a full-time job, and the Hospital quickly became my office, I thought the TV programming was a joke. I would laugh as I went from waiting room to waiting room, HGTV waiting for me with each turn of the hall. 

It’s one of those choice moments were you start laughing and soon realize that you’re the joke. Everyone else is up to speed on this standard TV-faire, but your naiveness and ignorance is what is laughable. HGTV was there long before you arrived.  

Let’s do some quick math… 

Based on some rough Googling, there are 6,090 hospitals/medial centers in the US. Lets say there is an average of 10 waiting areas in any given hospital (we’re lowballing it here...). That is 60,900 waiting rooms in the US. And let’s say 75% of those have TVs. That’s 45,675 TVs, all inevitably tuned to HGTV...one of the most politically neutral television stations available.

And let’s say those TVs run 12-hrs a day. That’s 548,100 hours of HGTV being watched across the nation’s medical centers in one day. 62.5 years of HGTV is being watched in a single day. (Full disclosure, this is lingering-chemo-brain math with a very limited research stipend…) Did I just rock your world? 

Probably not, but it is something to think about isn’t it? 

If Cancer patients weren’t at a total risk of infection, our cognitive function wasn’t semi-impaired from treatment, and we weren’t experiencing lung-failure or muscle-atrophy from the intense drugs being pumped through us, we would make one hell of a home renovation team from the equal amounts of HGTV being pumped into us from the waiting rooms.

The waiting rooms where we sit, offering up silent prayers for our Doctors to tell us we are “Unremarkable.” In return, the communal vestibule in which we find ourselves offers us flannel, hardhats, and a bandaid of “Normalcy” that frays at the edges.  

At first I thought Food Network was another neutral station that could add some variety to the television screens keeping us company day after day. But once you hit round one of chemo, you quickly realize that you are not some programming savant whose purpose in life is to revolutionize hospital waiting-room TV offerings. 

Even my mom suggesting something other than buttered noodles or ramen most days resulted in a cringe and an aggressive head shake. A futile effort in attempting to keep down whatever meager amounts of sustenance remained in my stomach.

So, maybe Guy Fieri and his trashcan chips should sit this one out.

What I am curious about though, beyond how all Hospitals appear to be on the same cable and shitty wifi-plan, is who determined a network dedicated to rebuilding a rotting foundation was the entertainment of choice for a group of people who are attempting to do the same with their bodies? Fundamentally there is some component of our cellular structure that has decided to pilfer our natural foundations. Much like these homes, we too are seeking to be saved. Salvaged in some way. Except ours is a matter of Life and Death. Our valuation is rooted in life-expectancies and in breaths versus real-estate appraisals and market appreciation. 

It is interesting how a network whose slogan is “Home starts here,” is played on loop in an institution whose slogan could arguably be “Life starts here.” To the average person who watches HGTV, the personalities and designs may represent the hope of finding their own little corner of the world to call their own. For me, it is a reminder of the impending stress of waiting for the results of bloodwork, scans, or biopsies. Waiting for the hammer to fall again, shattering this slow-growing illusion that I may actually be ok. 

It annoyed me, seeing these smiling people choosing to buy homes, while I sat choosing what chemo plan I needed to try next. These couples were dealing with a hiccup in construction, while I was dealing with a hiccup in my immune system. The stakes seemed drastically different.

I could barely walk into an appointment without someone holding me up. A twisted marionette, broken and tangled in the various IV tubes leading to my chest. While on the screens, Foremen stood swinging hammers and breathing in dust, puppet-masters of demolition.

These families were planning their dream home. I was just dreaming of going home, tired from a day of sitting in a waiting room only to be poked and prodded and asked if it burned when I peed. (P.S. It shouldn’t…so if it does, go get that checked out.) 

At first HGTV seemed innocuous. Then it taunted me. Now, it’s a bit like a familiar friend. Again a sign that my appointments are fewer and farther between. A sign that my immune system hasn’t given up on me yet. Allowing me to take it for a spin a little bit longer before it throws us another curveball. 

HGTV is a part of my medical soundtrack. The tinny sound of the voices as they radiate from the screens perched in the corners of the room. The way the sound waves hollow out as they hit the carpeting, crushed by the shuffling feet of whatever fellow stem-cell patient is finding their seat in the waiting room. Finding the seat from which they will offer up their silent prayers. Please tell me I am “Unremarkable”…

Now as I leave my appointments, I often look up one more time as I pass the TV, soaking in whatever last bits of open-floorpan knowledge I can absorb before I’m back in a few months time. 

I am “Unremarkable.” I am safe for now.