On display below are what I consider pinnacles of internal honesty & courage. I had been trying to figure out how to present these after finding them over the weekend. Whether to re-post them as-is or at all. Chris has, unwittingly, provided my vehicle.
After reading these, ask yourselves how Alison and Brittany, two women suddenly ejected far from sheltered, privileged, hopeful lives, would react to the notion that the benevolent Universe provides exactly what we need, all the time. Actually, you won't need to ask Alison. She tells you outright, and with emphatic brevity!
I've decided to post two of these, in the order I found them. The first is from Alison's MySpace page:
Alison say's: It is what it is...The End. Oh, One more thing. F**K cancer!
General: I enjoy being alive. I'm grateful for every day that I wake up and see my son. I think the stupidest saying ever is "Every thing happens for a reason". That is absolute f**king bullshit. It is what it is and that is it. If you don't agree you can explain to my son why he's motherless... Of course I'm not dead yet, and don't feel like punching out yet either. My game is still on.
-Alison died from breast cancer on 9/13/09; the day I was having the "dramatic" conversations with Andre in Portland.
Brittany's will take much more effort on your part, it is actually a paper that she wrote at Colorado State (I believe). It's raw. It's honest. It's personal. Considering its context, it's some of the most courageous and powerful writing I've ever read. While eloquent, it displays beautifully the difference between having a "vocabulary" and having a "voice." I'll elaborate in the following post; I want these to stand nearly alone.
by Brittany Barzee
And after the countless times of sticking my legs in the air, the baffled look of doctor after doctor, they finally uttered the words I knew I was going to eventually hear. As I gradually learned the gravity of the word “cancer,” doctors confined me to a hospital, the only thing they seemed to know to do. The captors kept coming in and out of my giant hospital room, the same grave looks on their faces. They stood next to the balloons, glanced around at all the flowers I never kept, cookies I never ate, and they got the scrunched brow, the limited eye contact, and the ruffling through file papers to give results. I never thought I would be told to write out a will, or live my life for “quality not quantity.” But I refused to be given an expiration date on my life, and demanded doctors grant me good bedside manners. When they spoke, it was like I was trying to swim across a river and everyone around me kept giving me things to carry to the other side, pushing me this way and that way, and still yelling at me that I could never do it, I’ll never successfully get across.
How I came to loathe those reclining hospital beds, complete with scratchy blankets and flat pillows. My vulnerability and weaknesses were visible for all who saw my file, or even entered the room. And before knowing the gravity of my “sickness,” there was a particular concern for my fertility; this was me thinking about my future, ten years ahead of me, still a goal that could be feasible. Since my doctor seemed to refuse to talk to a young female such as myself, he decided that giving my diagnosis to my family behind the large, closed doors would be best. It was when he finally walked in to speak plainly to me, I seemed to emit my uncertainty to the man we’ll call Dr. Johnson.
“Dr. Johnson, I really want to talk to you about something,” I looked up at his mustache as he cocked his head to one side. “I really want to look into having my eggs saved to be frozen, for later.”
“Brittany, I don’t think you need to worry about that right now. That’s not what you should be thinking about.”
“Well, it’s a big deal to me, and I want to look into the future, no matter what happens right now.”
He shook his head, once again dismissed my thoughts and concerns, patted my hand as if I were a child asking for candy. “That’s not in the plans right now.”
There was a second of silence, as I regrouped in front of this doctor who had seemingly sealed my fate. I refused to not be taken seriously. “Okay, well I need to do this. I don’t care. My fertility is really important to me. You need to start taking me seriously and the things I’m asking for.” And finally, he broke.
“Brittany, you don’t have time to be doing that. You have six months to live. Why would you be wanting to do that?” His raised voice freaked me out. Heaven forbid I refused to accept that statistic. “You have Stage Four cancer,” he continued, his voice revealed nothing but facts and science, statistics that gave him his nice white lab coat. There was nothing for me to do but lie there, sobbing. “Do you have $10,000 to do this procedure? You don’t have time to do that, it’s not possible.”
“But I want to. I don’t care,” maybe I was wrong to keep arguing through each sob, squinting through my tears.
“You know, you asked me to start treating you like an adult, well you need to start acting like one.”
I attempted to gather myself, then reply, “I am. I am. Handing this. Very well. All things considered. You don’t know. How this is. So don’t tell me that.” I struggled for words and assertion, but I did my best. As if I didn’t feel alone and isolated enough in my world, this man had just made it much darker. Soon after that he left, probably unconcerned with anything I had said, unaware of the fact that my nurse promptly came in and pumped me full of anxiety meds to calm me down, and pain meds to numb me up.
But not soon enough to prevent me from freaking out. My one ultimate freak out with no one in the room to see me, notice that the bus had just hit me in the face. But I must not cry, I must remain strong, for everyone else. In those cold moments after learning the truth, I came to the conclusion there is no God, no God for me. Who would leave me so alone, ask me to look death in the face without warning, or rules as to what to do. They never teach you in school what the proper answer is to “You have cancer.” There is no real response. Only silence. And people staring at you, as if they expect to see you deteriorate before their eyes.
I’m a middle child out of six kids, and I learned quickly to not rock the boat, and to simply remain unnoticed, as to not cause more stress to my Mom. The information I had learned about days before, and took in stride, was staring me in the face. A bleak future, barely a future. A week ago, I was getting ready to start just another monotonous, uneventful year of school. What’s six months from now, June? Doctors and their sciences will be the death of me.
After the tears, the shouts, the arguments, and the denial, the reality lives. Words I never thought I would hear, let alone words said to my twenty one year old ears, still seemed like words from a dream. A dream I had to live with and endure each day, without any choice or control over any of it. Chemotherapy, fentanyl drugs, pre-med steroids, and platelet levels make me uncomfortable. Just like breezy hospital gowns, IV bruises, and losing my hair. I loathed sitting in the waiting rooms full of people three times my age, and had to learn to be comfortable with the fact that people assumed I had been promiscuous and gotten cervical cancer. But until they found out that I had done nothing to warrant or contract this, doctors told me it was a complete and utter fluke, I let them live in their judgment, it wasn’t worth my time.
All I really wanted to do was go to class, be a poor college student that works in a restaurant. I wanted to smile again, let my long blonde hair down and go out with friends. When would I be allowed to joke and laugh and live life like I always did? I had been doing all the things I needed to do, was supposed to do, and should do. I talked to my mom regularly, and called my siblings on birthdays. I went out on the weekends, and always went to work on time. I blasted music and sang in my red Pontiac, and kept in contact with people from high school. I rarely wore sweats or hoodies to class, and I went to the gym a few times a week. Will I ever get that back?
Thoughts overflowed my brain, and I was powerless to get out of that hospital bed. My best friend, Megan, who had slept in the hospital bed with me the first night, and then scrounged up covers and couches for every night after that, stayed by my side even when my family drove in from Missouri. She had been my taxi driver, my cook, my confidant. She stayed through the roller coaster of emotions, observing quietly, taking in all information, and filtering it out to various others, as if she were somehow my inadvertent publicist. But she did it with grace, asked nothing in return, and I will be forever indebted to her for that. My older sister, practically my twin, sat on my bed as we attempted to make sense of what we knew. But there really was no way to fully make sense of this, so we cried.
“Brittany, I just don’t know if I can do this without you. I mean if you’re supposed to go, then we have to be okay with that, I guess,” she said through the tears.
“I know, but I’m not gonna die. I can’t. This can’t really be happening.” I didn’t know what to do. I couldn’t process this information, much less fight against what everyone was telling me. Of all people, I couldn’t have my stubborn sister succumb to this fate I had been set upon. Not yet at least; I needed a wingman, someone who would laugh in their faces as I had wanted to do. And even as I replay those events over and over, I should’ve done or said a million other things.
“So, I know you like the name Charlotte if you had a girl someday, but what about a boy?” My sister asked me.
“I always liked the name Gabrielle, remember?”
I replied, we had talked about this many times.“Would you ever want me to name one of my kids after those names? I would be honored to do that.”
After giving my consent, wanting to have some part of me to go on, even just a stupid name, I rested easier knowing my sister really would keep her promise to me no matter what happened. She had offered her blood for a transfusion to me, as well as kidneys, and after the potential of my not having children of my own, to be a surrogate, if that time ever came. I needed her strength, a plan of action to make it through this chaos.
Mom tried to be just as strong, although I knew that when my eyes were closed, or she was in her hotel room, she secretly fell apart behind closed doors. As the quintessential definition of a good mother, she used to leave notes in our lunches, snacks after school, and never ending hugs. She devoted everything to me, even the simplest tasks of rubbing my back or putting lotion on my bloated legs. We all sat and watched television, read, colored, or did cross word puzzles, anything to distract and keep us busy in those long and tedious hours, trapped within the bland walls of the hospital. I learned to let my mother care and worry over me, if only to let her have the illusion of control over a small part of the disaster around me.
Eventually, I went home, back to Fort Collins which had become my home, and would remain my home through this semester. Perhaps it is because I’m stubborn, but I had to stay, had to go to school, keep some semblance of normalcy in a now unsure world. Criticism, concern, and condemnation filled my ears during every conversation, with every person in my life pointing to a road and saying “go home, one way or another, go home.” Apparently, I had to live defiant; to have control over a life that wouldn’t ever be the same. As I would sit myself upright in my hospital bed, I attempted to not reveal my shaky voice, for fear of someone who could take advantage of my uncertainty and drag me back to a place I had despised. No one had dealt with anything like this, but Megan I felt, had lived a particularly charmed life. Even my best friend, who was also consequently a roommate, disagreed. “Dude, it’s not that I don’t want you out here. Of course I want you to be out here.”
“Okay, well what do you mean?”
“I just, I don’t think you’ll have the best care out here, with us I guess.” She looked down at her hands, avoiding some eye contact, though not hard to do with the dim lights of the hospital room.
“Look, I want to stay. I need to stay. You know more than anyone how much I don’t want to go home. I mean, no I don’t think I’m a failure for going home or anything, but I just feel like staying here is where I need to be. It’s not like I won’t have doctors, and I really do have a good support group out here.” I felt like I had something to prove, once again defending my reasoning and rationale. After significant quarrels and questions, like a best friend only could reassure, Megan simply said, “Okay, I’ll respect that. And we will do our best.” We meaning her and Julie, my other roommate and a close friend, all of whom had taken on the burden of me. I guess it took me a while to realize that cancer hadn’t just struck me, just me physically, but everyone around me was also in this for the long haul. Each morning comes more realizations of the need to search for normalcy. Each morning comes trudging out of bed, feeling not just a day older, but wondering if the fight is being won. I had to get used to the mindset of needing Megan or Julie (both roommates still remained in our condo) to be there to make my food because I sure as hell couldn’t get off the couch to do it. Or they had to be there to help me rinse out my mouth, for fear of developing sores in my throat. But I didn’t know what to do when I started to seriously forget things, a sure side effect of chemo. They’d ask what I had watched on TV or what time my next doctor’s appointment was, and I honestly could not remember.
I felt foolish and elderly, helpless and burdensome. I was going outside of anything called a comfort zone, by having to give up serious amounts of pride, and learning to allow others take care of me. Mixed in with this was trying to prove to myself, and my roommates that this was the best choice to stay in Colorado. The deal remained that the day I could no longer get up the stairs to my room was the day I booked a ticket home. But I stayed kicking it in Fort Collins. I had been used to being ignored or blowing things off for fear that those around me would be annoyed with me, stop caring or basically cease to be there. No matter how childish these thoughts and ideas were, they still existed as clearly as having a time table for my life.
Perhaps it was the constant calls or text messages, or the promises of fun things to do when I was to come home, or the fact that she got jealous when my sister Jessica got to come see me, but I really missed my Mom. I wanted more than anything to curl up in her lap, as she would always allow me, no matter what age. She took such pride in being a mom, a good mom at that. But I knew that as crazy as it seemed to everyone else, I had to stay in Colorado for a while, I had to remain away, for whatever reason, perhaps just to be difficult like I knew I could be. The constant conversations with my Mom were just little reminders of how much she missed me, and also gave her more things to talk about and update the constantly questioning friends and neighbors. Sometimes, this was when I became more stoic, not wanting any detail to be spared to the always unsatisfied public. I once again closed up, even to my own Mother.
And then when the pain came back, as it inevitably does, I become even more vulnerable, powerless, and I imagined what exactly is going on inside. Maybe it’s spreading even further than my lymph nodes and abdomen and uterus. Maybe it’s dying. Maybe I am. I can never really know, and neither do the doctors. These were the days that it took everything in me to not scream and cry to the sky, and to that God that had promised me a long life, full of good things, and I had been portrayed. I wanted to just quit, check out, or take a lot of drugs to numb the pain and dull my senses. Of course, I never really followed through, but it’s more difficult than I had imagined to have virtually no choices in anything and everything. Nobody knew exactly what ran through my head, and it took many interventions for us roommates to get on the same page, learn to communicate about this messed up situation. Why would I want to share the dark dreams, the deep hurts, the deathly thoughts, when both of them already had plenty to deal with, I couldn’t keep the burden going. And especially for Megan I had to keep on a good face for her, despite our long talks at night, or the occasional crying fest, if only to protect her from the darkness that I battled.
So they’d talk about what would happen if I “kicked the can” or what would happen if I didn’t show any sign of improvement. Thankfully and not to my surprise, I did and I have made strides. Even so, I felt anxious as to not convey the depth of my pain, or the extent of my dependency on various drugs. My roommates started color coding my pill bottles to keep them straight, and served me hash browns and scrambled eggs on a regular basis, one of the few things that sounded good and didn’t make me puke. Conversations steered toward what I was able to eat and how I felt, as opposed to what we were doing that weekend or any new hot guys in classes. Instead, everything became completely and utterly predictable. It all became a prison to me. A person who had been so active, working and going to school taking 18 credits a semester, was now virtually confined, no control, no escape, no end. This was my sentence. And I had no idea what I had done to get this.
Inevitably, the calls start pouring in, the inbox fills up, and the mail man probably wonders why I’m getting tons of packages. The sympathy, the prayers, the concern, the dismay, all written on faces of people, and I still don’t know how to take it, accept it, or understand it. When I had scoffed or secretly judged people who sent me bible verses or small quotes probably taken from some desktop daily calendar, I now cried at them. Words I needed to live for, because without them, maybe I wouldn’t be able to be alive. Things I had taken for granted, no longer mattered. I cried at silly commercials, was touched when a friend sent me a text saying “I love you, and I miss you.” But always in the back of my mind was where I wondered “is it out of obligation, kindness, duty?” I could never tell.
So, I sat on the couch, memorized times for the daily shows I watched, attempted to attend classes, and shove certain thoughts out of my head. I put aside magazines, word searches, and seasons of ‘Friends’ and made sure my family knows I’m doing “just fine” each and every time I talk to any of them. But everyone reaches a breaking point, and in these long, winter days, I had finally reached some point of that. Where was God with all this? That omnipotent presence I had been searching for, for so long seemed further than ever, had ultimately abandoned me. I had already been mad at God for so long, turning my back on so many of my beliefs. This could only further broaden my divide from the divine, allow me to continue to be pissed off and silently scream at the sky to a God that affirmed how much He hated me. After being questioned and constantly interrogated about fatigue, nausea, and limping, I try to not think about how abnormal my life has become.
I still see people and think about what I wouldn’t give to be in their shoes, to have graduated from college, to live to be married and have children. How nice would it be to have a career, to be accomplished? I think of the things I had taken for granted, things I had assumed would always come my way and figured that because I’m alive I would just naturally come across these pleasures. I would give anything to look cute and well groomed, ready for a regular day, versus the no make up, rolled out of bed look I inevitably have to sport. And yet, I have to face everyday hoping I don’t get a blood clot, or try to be excited when I can get up and go to school for an hour. I still see people, and consciously try to not resent them because they aren’t supposed to go through certain things, or understand and value health, like me. I suppose this is what it took for me to learn to value my health. I’m young, I assumed I was invincible and obviously I’m not. I guess we all have to grow up sometime.
Each day, more and more leaves my body; pounds or hair, emotion or tears. Chemotherapy treatments find me sitting in lazy boy recliners, talking “shop” to other patients about shaving my head and having the right “shine” on my soon to be bald head. Along with getting to know certain nurses, I get to know what arm is best to get a blood draw, as well as trying to protest against having to take more medicines and supplements. Suddenly, the day comes where I realize I can’t keep pulling out clumps of my thick blonde hair. Everywhere I sit, a trail of hair follows, cascading down my back, though not in healthy waves but in broken up pieces, shriveled up because they couldn’t take it being attached to my head, couldn’t take the trauma. I decided to practically stop bathing, as it does virtually nothing but give me bald spots and clogs up my drain uncontrollably. I don’t do activities that cause sweat or any odor, so I get away with it fairly easily, although I could practically kill someone if only to give me the ability to run a couple miles. Fill my lungs to the fullest, and have sweat dripping from every pore and feeling like my legs would give out on me. But only if I could be normal, not the broken or damaged or defected body I have lived with. Then I realized my wardrobe consisted of sweatpants and t-shirts, and I’d have a good day if I can make it to the refrigerator by myself, despite how slumped over or how much limping is necessary.
Questions fill my head, continuously and without any real result. Maybe I should have gone back to Missouri and let my family take care of me, and perhaps my roommates really are talking bad about me behind my back, constantly analyzing my every move. Does everyone really think I’m going to die? Maybe some people have already buried me. Should I pick out a funeral playlist? Maybe it’s time to write out that will. Everyone dies. But not at twenty one. No, I can’t let myself think like that. I can’t freak out and leave everyone here because all they would do would be pissed off at me for leaving. I already know what it feels like to have that happen. I know how funerals go of those who left this life with an untimely death. Being involved in theatre and fine arts all through my life, I’d learned that family is not always blood related. And losing a member of that close knit family to a car wreck during an ice storm in January, not only put mortality in perspective, but also grieving. And even after it had been five years, there is still little closure for Jeremiah’s death since he had to be cremated; his body had been so mutilated by semi trucks after he was ejected from his car into oncoming traffic. I saw how much it hurt to lose a dear friend, I couldn’t become the next one, even over a slow period of having a deteriorating body. Is it bad that I sometimes worry that it could be me next? Is this all really mind over matter, or am I simply just stupidly optimistic, grasping at unattainable dreams and goals? I’m twenty one. Most kids my age are out having the best sex of their lives, getting wasted with trusted friends, and prepping for midterms. And while they all made plans for Spring Break, I planned for chemo treatments, and hoped that this week is more tolerable than the last.
You know, everyone says you learn to value things and learn to look at the “little things” in life when this happens. So, is that why I’m feeling nauseous with every good thing I eat and drink, or why I feel like I’m running a marathon when I try to go to Target with my roommate? Is this all to help me appreciate the leaves in my backyard, and the days when I’m feeling “normal?” Or value the art of meditation, and giving daily reports on my bodily functions? Each little thing becomes a battle to defeat, whether it’s getting out of a car, or making sure I’m not ever too far from a bathroom. I feel like I’m about seventy five years old.
The day came when I decided to shave my head. I vacationed in L.A. for a weekend with my sister and a couple of close friends. Everyone wanted to buy me things now, so the guy shaves it for free. It’s a good thing I don’t have big ears or huge lumps on my now vulnerable, but hairless melon, as my friends have come to call it. I decided I’m grateful for wigs, drugs, beaches, and not being the only one to have ever had cancer or something physically “wrong” with their body. Thank God not only for the person who invented the wheel, but the wheelchair. I may not have been able to go to the beach or even get out of an airport without it. I have to say that wheelchairs are the best kept secret to getting through long lines and security, but not without the hassle of strangers’ baffled looks wondering why the hell a girl my age, who looks well enough, should be in a wheelchair, let alone pass them in line. What they don’t see, is me trying to stand up straight, not have labored breathing and beads of sweat dripping down my forehead during my attempt to feel the same. The red purse full of medicines, masks, and other things to keep me looking foolish having a germ phobia doesn’t exactly help my case either.
As people keep calling me, checking on me to see if I’m alive, they pour in sympathy and the awkwardness of not knowing how to deal with this, not that I really blame them. I don’t need pity, I don’t need more self-help books. Normalcy is the only thing I crave because it’s the biggest thing I lack. I just lost thirty pounds on the “cancer diet,” as I call it, and I have a port sticking out of my chest that makes me look like Frankenstein. I have no use for razors anymore, as no hair grows, anywhere. My arms would say I could be a heroine addict based on all the scars and bruises that notoriously line each arm. And those people that continue to ask “what my opinion is about death” should probably go think about it for a while themselves, and then come back to me. In a world that seems to now be spinning twice as fast, it would be nice to let it slow down for a bit, not only to notice those leaves in my backyard, but for a good healthy laugh that makes my side hurt from happiness, and not pain.
-Brittany died from cervical cancer on the morning of August 7th, while I was writing about Dennis, and 10-days before I left for Devils Tower. From the Update page:
10 August 2009 - The family will receive friends tonight from 6-8pm at the Church of Jesus Christ of Latter-day Saints; 1416 SW 19th St. Blue Springs, MO. A celebration of Brittany's life will be Tuesday at the church at 11am. The obituary was in the KC Star Sunday, and can be viewed here. Thanks for all your prayers and support.
4 August 2009 - Brittany was recently placed in the ICU at KU Med... and she wasn't really a big fan of that. SO, she has made the decision to come home under hospice care so she can get back to her bed, take a hot bath, be with her family, and play with her kitty cat.
On Brittany's website, there is a Pay Pal link to a fund for Brittany's medical expenses. If you've even considered buying these pathetic excuses for photgraphy, please give the money to her family instead. Follow the "Walk for Our Sister" link. Not a bad "gift idea" for the holiday season, and I'd encourage you to spread the URL too.
These were, obviously, powerful, seemingly random middle-of-the-night finds that struck like lightning, holding high the metaphorical mirror in which I first saw myself, then others. They literally brought me to the brink of tears; that's not easy to do! I neither effort nor claim to prop myself upon a pedestal beside Alison or Brittany. Yet, I can tell you that I admire nearly no one. I admire and on some level now consider both of these women a personal voices of conscience. They've set a new standard for inner-courage and honesty, and provided a powerful antidote to our expected "sufferance" of selfish, comfortable rationalization. I'll save the rant 'til next time.
Notice, neither of these women were "professing" some personal doctrine or philosophy nor claimed answers of any kind. They were simply being honest: first with themselves, then by extension with whoever chose to read their stuff. Their examples have conjured up feelings of both shame, quiet anger, and the unavoidable, "If they can face and share truth, what the fuck are you afraid of?" screaming in my skull. I know it's "hard!" Yet, silently asking that question has emboldened me simply due to the harsh, honest introspection I myself have, and feel I continue to display. Declarations like that won't make many superficial friends, and will likely cost (more) frivolous acquaintances. I've quietly learned not to make the cowardly assumption that this will make me an "island." Hardly! It makes one a beacon to "men" rather than feeders of a meandering flock. It's simple: at some point I expect people to man-up, or shut up. When that point arrives is in direct relation to the amount of shit spewing from the jowls!
The alternative attitude reminds me, again, of the media's mass-appeal philosophy: "The masses are asses! Appeal to the lowest common denominator to get the most listeners (friends)!" I refused then, and I vehemently refuse now. Climbing mountains and crossing deserts is courage of a secondary nature; it takes real courage to climb within.